Support thread for all parents with reflux babies...

(991 Posts)
PosieParker Wed 18-Aug-10 16:00:04

Just thought a pooling of ideas would be useful. Any ideas about meds, symptoms, coping strategies, things to make a baby quiet!!

Symptoms:

Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Little sleep
Constant crying/screaming

(please add)

Meds:

My memory is a little rose on this and I can't remember

Coping

SWING,
pushchair walks
accepting help
Sometimes putting your baby somewhere you can't hear them whilst you have a large gin cup of tea.

Loving that last line posie grin

I can add projectile vomiting, acid vom, and acid breath to the symptoms; and Infant Gaviscon to the meds. It has worked a treat for my now eight-week-old, when combined with good winding and keeping her upright for a while after each feed.

nickytwotimes Wed 18-Aug-10 17:35:25

Oh, I am struggling so much with this atm

Ds 2 on Ranitadine, Domperidone and going on to Omeprazole.

Another symptom is foaming at the mouth and sticking tongue out constantly.

PosieParker Wed 18-Aug-10 18:09:53

I would also use the baby carrier to get on with stuff when baby was completely not-put-downable!

Any suggestions about coping with siblings?

I used to try to use any quiet moment to focus on other dcs, still feel dd (26 months older) suffered badly from no attention.

sarah293 Wed 18-Aug-10 18:15:42

Message withdrawn

PosieParker Wed 18-Aug-10 18:23:52

I found writing down the times he was screaming helped too, as I was convinced it was all of the time. I didn't start until he was past the worst but every time he cried it completely did my head in, it wasn't as often as I thought.

ib Wed 18-Aug-10 18:32:10

Symptoms:

Sicking up curdled milk
Constant hiccups

Coping:

Walks with baby in sling
Lots of muslins to wipe up sick
Lying baby on tummy across your legs
Accepting that all daytime sleep will be on mother, most on breast (and providing suitable light entertainment)
Giving a bit of baby rice before a bf to help thicken it up
When it all gets too much handing them over to someone else for a bit
Forgiving yourself for being unable to make it better

Igglybuff Wed 18-Aug-10 19:04:39

Hello! My DS is getting better but some symptoms still.

Symptoms
Acid out of nose
Arching during feeds
Nursing strike
Does not settle on back
Prefers sleeping on front on me
Massive weight gain (as nursed for comfort)
Wet burps
Choking when on back (goes bright red, can't breath)

Meds

Ranitidine
Tried gavisconbut no good
Domperidone and omeprazole gave DS bad tummy

Coping
White noise
Swaddling
Dummy
Sling
Wind wind wind by rubbing
Routine (DS got overtired so I had to enforce naps etc)

hmmm, I thought mine's reflux was under control but we do have a few of the above symptoms that I did not know about. Might have to ask GP more at 8 week check on Tuesday. Thanks

melonian Wed 18-Aug-10 20:01:13

Wow I wish you'd posted this 9 months ago as I had no idea why dd did all of those things at the time.

Strategies that worked for us were holding her swaddled and bouncing up and down while sitting on the gym ball thing I had for labour. Worked like a charm to get her drowsy enough to feed, the only problem was then to get her into her cot when asleep. After 5 months of that I have thighs of steel.

Also, although controversial I would consider/talk to paeds about early weaning. I waited until nearly 6 months with dd and she was so much better on solids, I wish I had weaned her at 17 weeks to save her some of that pain.

Big time hugs and sympathy to anyone going through it at the moment.

strawberrycake Wed 18-Aug-10 20:14:21

Has anyone else experienced vinegar poo? As in poo that REEKS of vinegar? Is it linked or just a weird quirk of my DS. It made a change from rotten eggs...

nickytwotimes Wed 18-Aug-10 22:32:03

strawberry, ds's are a bit vinegary, yes.

Jacanne Wed 18-Aug-10 23:02:36

DD3 is on omeprazole and domperidone - sickness is still the same but I think acid is better - though we still get the odd bad day.

nickytwotimes - DD3 is constantly foaming at the mouth and her tongue is always out - I was worried about the latter and have been googling to see if there was some kind of developmental reason so you have put my mind at rest - didn't realise it was a reflux symptom.

On the symptoms list there is also Sandifers Syndrome - where baby contorts body into kind of an S shape, looking like she is having a fit - thankfully only happens when it is really bad.

DD has very very eggy smelling wind but I assumed that was the meds?

Cranial Osteopathy worked for a while, can't afford to do it more regularly but DD definitely bought up wind much more easily after I had seen one.

If you are BF I have found that block feeding helps - ie sticking to one side for a few feeds before switching - flow of milk is slower, less watery - helps when DD is constantly sucking of an evening.

God, reading this thread has helped me already - so much is very similar. I have two other daughters and they find it very hard to cope with the screaming that occurs everytime I put dd down to be a Mummy to them. Early evenings are the worst time for us - usually from around 6-9ish - dd sleeps so little during the day (unless held) that she is exhausted by nighttime and thankfully does a 4-6 hour stretch without waking.

PosieParker Thu 19-Aug-10 07:48:11

I am so delighted that it's helping.

I also had issues with dd1's tongue, it use to come out sideways and I never considered that that was a symptom of anything.

ib Thu 19-Aug-10 10:57:42

Yes, solids really helped ds1.

Jacanne Fri 20-Aug-10 09:09:49

I am finding it really difficult to get the Omeprazole into dd - she's too young for fruit purees (which is what it suggests mixing it with on the packet. Has anyone tried mixing it with a little fruit juice or would that be a bad idea?

Also does anyone have any idea of doses re weight of child - it worked brilliantly for the first 3 weeks but we seem to be back where we started now?

nickytwotimes Fri 20-Aug-10 11:41:24

Jacanne, I don't know, but the NZ website, cryingoverspiltmilk has dosage schedules and I think tips on administering omeprazole. I seem to remember mention of fruit juice too, but have a look there. It is a good website.

Jacanne Fri 20-Aug-10 11:44:43

Thanks Nicky Will check it out.

PosieParker Fri 20-Aug-10 18:08:01

Another mention for the swing, seriously if you don't have one get one!!

bubblebabeuk Sun 22-Aug-10 05:33:08

Enfamil ar on prescription, its a special milk that thickens on contact with the acid in babes tummy, theoretically minimising vomiting progectile or otherwise.

however after a week on it, DS is still chucking up, and now its a nightmare trying to get his wind up sad he's also on domperidone and renatidine.

Also with thickened milk I found when he is sick he's far more liable to choke on it now, and has had to have his airways manually cleared on a few occasions.

another symptom could be constant hiccups our consultant said its very common with severe reflux babies, something to do with irritation, obviously thats NOT to say all babies with hiccups have reflux.

coping ideas - learn to catnap, I am now able to cope with having maybe an hour at a time if I am lucky so an hour here and there recharges me.

also i second the sling idea, although my DS is a prem so found the bruin (?sp) one a bad fit switched to a moby and havent looked back, also means I get a bit of closed eye time with him in sling while I doze sat up on sofa wink

anyone got tips for getting wind up once on thickened forumla?

helenwombat Sun 22-Aug-10 08:54:13

Other things I've noticed (may just be mine):

So much dribble (sometimes sicky) too - bibs & tops are soaked within minutes!
Tongue often out.
Prefers head to right hand side when tired or refluxy.
Wriggling & writhing, keeping himself awake when he & his eyes want to sleep.
Never sleeping for more than 45 mins, waking tired & angry but no chance of sleeping again.
Screaming, arching breast refusal unless breast completely full & flowing v fast (too lazy to suck) - so block feeding definitely doesn't work for us.

Coping (just):

Wish I knew!
Only thing that works most of the time is going out with baby bjorn (he didn't like the trendy sling I bought), him facing in, hat covering his eyes, dummy in mouth & me walking fast!
At night, rocking with loud white noise for ages until he finally crashes.
Mixed feeding - breast at night/when not overtired or refluxy, bottle at other times.

On ranatidine & I'm on boring diet (not soy, wheat, dairy, tomatoes, citrus, caffeine) but not seeing much improvement.
Am going to take bubblebabeuk's advice & work on catnapping! Only problem is I seem to take a while to drop off & just as I get that funny taste in my mouth, ds' screaming begins!

peasizedbladder Mon 23-Aug-10 08:44:36

Coping:

Lower your standards (clothes that are 'clean enough'; getting ready to go out = cleaning teeth and throwing on whatever clothes are to hand; cleaning bathroom = shoving bleach down the loo)

For bottle fed babies - checking/changing bottles (our DS sucked air in either side of the dr brown teats, he gets a much better seal around nuk teats), the extra air just added to his pain

G&T acceptable after 5pm

Try to see friends each day so at least i don't feel alone (even if i cant actually finish any conversation)

Buggyfit - baby in buggy being pushed (so happier than me siting on my butt at home) and i get some exercise and endorphins flowing. i was begining to feel down before starting buggyfit, much better now. it allows me some 'me time' even when no childcare is available

remembering they will grow out of it (eventually) smile

ib Mon 23-Aug-10 08:48:31

Oh, yes, the babybjorn. I hated it, would rather use any other sling. But it keeps them in just the right position (facing outwards) and will sometimes settle them where nothing else will.

Hazeyjane Tue 24-Aug-10 06:20:58

thankyou for starting this thread.

ds is 7 weeks old and has reflux, his symptoms seem to be :

lots of pain/discomfort after feed

milk coming out of nose (he doesn't vomit, but seems to leak)

very small feeds, frequently

lots of wind/farting

noisy all the time - grunting, squealing, and whooping

arches back, scrunching face up in pain.

has to be kept upright for ages after a feed

he also has his tongue out a lot of the time - strange!

he is on gaviscon, which is doing nothing, but we are going back to the hospital to see the paediatrician - hopefully soon!

nickytwotimes Tue 24-Aug-10 13:45:27

Glad I'm not the only one with an lo whose tongue is often out and who has a look of 'yeuch' on his face.
Ds has little and often feeds too - it's meant to be better for reflux so guess he knows what he is doing.

We ar going to hospital tomorrow for a few days - ph test. Dreading it.

Hazeyjane Wed 25-Aug-10 05:42:16

good luck at the hospital today, nicky.

i'm starting to get to the wildeyed stare stage of sleep deprivation.

Lavenderboo Wed 25-Aug-10 09:45:32

Symptoms:
Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Fights sleep
Constant crying/screaming
Hiccups (even when I was pregnant?!)
Tounge poking

Meds:
Gaviscon Infant
(Infacol was useless and Dentinox caused screaming meltdown)

Coping:
Baby Bjorn.
Only falls asleep upright over my shoulder, or in crock of my arm (his head raised) never on his back.
Osteo cranial treatments
BF while I lie down (DS eats less fussily perhaps because milk comes out slower?)
Taking the path of least resistance (if that means a bit of unplanned co-sleeping so be it).
Realising nothing will 'cure' this, but some things can help take the edge off (and save my shattered nerves).

nickytwotimes Wed 25-Aug-10 10:36:58

Oh, God, yes, path of least resistance every time!

hazey, sorry you are so knackered. I feel your pain.

Hospital postponed till Monday due to them lacking piece of equipment...

ib Wed 25-Aug-10 18:59:43

Good luck with the pH probe - we found it incredibly useful. Not only for the diagnosis but it also directly showed us the impact of the things we were doing - in terms of positioning and so on.

It was tough to watch, specially when the number actually hit zero but we were very glad we were able to do it.

helenwombat Thu 26-Aug-10 04:26:09

Good luck nicky, let us know how it goes.
How do you get ph probe, should I just ask paediatrician next time we go (friday)? He just seems to prescribe us different drugs or higher dosages every time we go.
I'd love to be able to co-sleep. Ds won't lie next to or on me, he just arches, wriggles, squirms, fights, scratches (his new one - I wake to funny scratching noise at night) - he is having none of it. The only way he sleeps is in his [sloping] cot, v tightly swaddled (& often reswaddled after), on his left side, after hours of rocking & white noise!
Ditto feeding for comfort - feeding is a battle ground nowadays.
Please let this end soon.

virgo1979 Thu 26-Aug-10 08:52:50

just read the symptoms on here and now it all makes sense! i had asked hv about ds being sick AFTER being winded after a feed and she said it was fine...
ds brings up curdled milk, has lots of dribbles, and sometimes arches his back and thats when i can tell he needs more winding....

should i take him to gp? he also constantly has a white tongue.....

feel like a rubbish mummy now.....

RunningOutOfIdeas Thu 26-Aug-10 09:36:36

Virgo, you are not a rubbish mummy. Go to the gp. With DD bringing up curdled milk and the white tongue were the things that convinced the gp.

Up until DD was 18 months, she dribbled constantly, vomitted milk (but not solids), hardly napped and woke every few hours at night. Ranitidine worked util about 11 months. Then switched to omeprazole.

Teething made the reflux much worse. With hindsight I should have talked to the gp about increasing the dose of ranitidine during teething.

The dribble caused eczema on her neck that she used to scratch at night so much there would be blood across her cot. Corticosteroid cream helped a little but thick pawpaw ointment worked wonders. It acted as a barrier to the dribble as well as helping to heal the cuts and soreness.

When DD was 6 weeks old I tried putting her to sleep on her left side. It did seem to help.

My DD is now 2.4 and has hardly any symptoms of reflux now. She still gets hiccups frequently. They are worse after a growth spurt. I was told that the hiccups are very common with reflux because it is the diaphragm muscle that closes of the top of the stomach that is usually not working properly with reflux and it is this muscle that spasms to cause hiccups. Occasionally she brings up a bit of vomit, but knows to have a drink of water and then she is fine.

Flossie69 Thu 26-Aug-10 10:20:50

My DD is 3 months and also has reflux, although I had no idea that some of her symptoms are actually related to this - hiccuping, white tongue, sticking tongue out, and foaming at the mouth. However, I don't think it is as severe in her as in some of the other cases on here - she is currently on Gaviscon and it does seem to keep it at bay. She possets regularly, arches her back after winding mid-feed, but does sleep well.

However, reading these posts, I wonder if I should go back to the GP and ask for different meds, as I have noticed that as her feeds increase in soze, the gaviscon is less effective. She may also just be used to the unpleasant sensation?

I am constantly amazed by how much can be learnt from other Mums on Mumsnet - thank-you all

Hazeyjane Thu 26-Aug-10 10:47:56

aah the white tongue! every time someone mentions a new symptom, i recognise it as something that ds has.

sorry to hear about the delay nicky, hope things are a bit calmer with you.

the gp i saw the other day was lovely, really listened and talked about coping strategies, and said how important it was that dh and i look after ourselves and each other, she thought I was anaemic, so did a blood test. She has referred us urgently to the hospital, but more importantly she took me seriously and was very sympathetic.

so i would add to the list of tips

FIND A GOOD DOCTOR

TAKE TIME TO TAKE CARE OF YOURSELF AND YOUR PARTNER.

ib Thu 26-Aug-10 12:32:27

A question for those of you with older dc with reflux.

Have you had any problems with their teeth? If so, have you found anything that can be done about it?

Ds1 is 3.9 and has some signs of acid erosion - the dentist as much as said there's nothing we can do about it at this stage, which I'm not too happy about.

I'd love to hear your experiences of this.

nickytwotimes Thu 26-Aug-10 13:41:21

Oh, the white tongue. I asked hv about that months ago!

Sitting next to foamy mouthed hiccuping boy here.

virgo, no way are you a crap mum! I'd never heard of reflux till I had this boy. Mn has been a great support.

Sorry, ib, can't help you there as we are only at 3 mths! Never considered that. Have you used the 'Little Refluxers' or 'Living With Reflux' websites? they might have more knowledge if bigger refluxers.

RunningOutOfIdeas Fri 27-Aug-10 12:15:58

Sorry ib, I can't help you. DD got her first teeth at 13 weeks and her reflux was really bad when her molars were coming through. So this does worry me.

I have a dentists appointment in October. I am planning on taking her with me and hopefully she will be willing to open her mouth for the dentist to have a quick look.

I have asked the dentist about this before. He said they don't usually see children before the age of 3 because they are unlikely to get a really good look in their mouth. He said if nothing is hurting it is reasonable to assume there are no real problems.

hildathebuilder Fri 27-Aug-10 12:26:17

Hello

My Ds has had reflux since birth. The main symptom we started with was apnea attacks/desaturations associated with feeds. Scary but it did mean we got a quick diagnosis.

I think we have all the other symptoms.

Method of coping - reminding myself this will pass, a lot of patience, a lot of chocolate a magic swing, a sling and ocassional complete collapses to get it out of my system.

A quick question for those of you with older DC. Does weaning help. I've just started weaning DS on the advice of the dieticians, and he loves food more than milk but then eats and eats (well we are on day 5 and he's having about 2 tablespoons or rice and one of fruit at lunch and 1 of rice and 1 of fruit in the evening - obviously on little weaning spoons) but after a feed he seems to be worse not better.

ninaandbean Fri 27-Aug-10 12:29:45

hmmm my GP was lovely when I saw him this week re DS reflux issues (not been diagnosed yet, but has all the symptoms described here, inc white tongue!) I'm writing this while DH patiently tries to wind him, through DS's cries of rage and vomit. Had a horrible night last night. He would only take an oz at a time from the bottle, projectile vomited it every time and wouldn't sleep. I've managed to get him off for three hours today in my baby bjorn, but no such respite for me!

Has anyone tried chamomile tea to make up their formula? I've seen it suggested in several colic threads on here but I don't know if it would work for reflux? DS is only 5 weeks old and GP reluctant to prescribe anything at all yet. Wants to see if he grows out of it. I've been using infacol to no effect, but I dont know if it's worth trying other things in the meantime before our six week check this time next week? Hope to convince GP to take another look at that point...

ninaandbean Fri 27-Aug-10 12:30:39

meant to say, GP was lovely and reassuring but didn't want to rush into prescribing things taking the 'he'll grow out of it' stance.

helenwombat Fri 27-Aug-10 12:58:14

Have been to paediatrician today. DS now on losec (omprezole, or however its spelled), just praying it works. Has anybody any good experiences of this drug?
I kept thinking the zantac was working/he was growing out of it as we'd have one good day or night & then it'd all go to pot again.
DS is now 21 weeks so have passed the 'it gets better at 3/4 months', sadly. Paed now assures me it will get better when he learns to sit up independently, so waiting for that one.
One good thing (relatively) is that DS's reflux seems less silent now - he is sick after feeds a lot more, so a little more comfortable - better out than in!
Nights are just so hard, because I don't hold him upright for ages after a feed so he just screams & arches for hours on end. Then its a vicious circle because he is extra overtired/unable to sleep/refluxy the next day.
ninaandbean, I tried chamomile but it was spat out as I was bfeeding at the time, so I guess he might take it with formula. I have given him a homeopathic remedy containing chamomile since he was tiny, but don't think it works - I keep trying, ever hopeful. Would much rather go down the natural route than pump my little boy full of drugs.
Does anyone use anti-reflux/stay down formula? I thought about trying that, but then thought that it might make things worse, as he'd be uncomfortable not being able to get the excess milk up?

Hazeyjane Fri 27-Aug-10 14:00:56

Hilda - re the apnea/reflux.When we saw the gp with ds's 'whoops', she originally thought it could be episodes of apnea. When we saw the dr at the hospital, he said it was reflux, and that the 2 weren't related. Whatsymptoms does your lo have? I'm curious because ds was born with respiratory distress syndrome, he makes a lot of grunts and whoops, and sometimes when he squeals it is as though he is startled and his breathing is very rapid afterwards.

helenwombat,that is interesting about silent reflux, and whether they are more comfortable bringing up the milk. I had thought it was a good thing that ds doesn't vomit, but maybe its not.

thebunnies Fri 27-Aug-10 14:17:43

Losec (omeprazole) has worked really well for DS. The easiest way we find to administer it is to disperse the 10mg tablet in 10 ml of water or half a tablet in 5ml of water(we use the cap of an Avent bottle so you can see what is going on) and then gently agitate it. Apparently, you shouldn't squash the little granules as these are important to how the drug works. We then use a small syringe and syringe it 1ml at a time into DS's mouth - aim high on the cheek - and make sure to get all the little granules in. This works well 95% of the time. If he vomits it up after less than 10 mins then we do it all over again.

Max dosage is about 2mg per kg of weight AFAIK. DS is 8.5kg now but still on 15mg although paed has said I can up it to 20mg if we have a really bad week (like last week )

Once you start weaning (we are just starting) then the paed told me you can disperse it and put it in a couple of teaspoons of fruit puree if that's easier for you.

Allison Scott-Wright has a book about sleep (called something like Sensational Sleep) which has a really great chapter on Reflux symptoms, behaviour etc - it really really helped me to read it and made me much more confident of pushing for a diagnosis for DS and, more importantly, believing there could be a solution. (And now that DS's reflux is reasonably under control, I can even read the sleep sections without feeling utterly hopeless ) I've used Allison for advice too and she is great at troubleshooting. For example, a couple of weeks ago, DS started waking up really early and crying his "it hurts" cry. Allison suggested that I switch his Losec dosages around so he gets a bigger dose at night to see him through to morning and this has really helped. She also advised me to use a little bit of Carobel in his feed which has made a real difference to him too.

A few months ago, I knew nothing about reflux and I initially found it really difficult to get the right help. Threads like this one are great.

Zara75 Fri 27-Aug-10 14:33:56

My little one threw up more like an explosion after her last feed, literally every night.

coping: losts of towels around us.

I also discovered herbal tea for babies.
Has anyone ever tried baby stomach ease tea?
It worked a treat.

RunningOutOfIdeas Fri 27-Aug-10 15:18:12

Hazeyjane, I have heard of refluxers who are often sick being described as 'happy chuckers'. So the silent reflux type does seem to be more painful.

hildathebuilder Fri 27-Aug-10 15:42:00

Hazey
My DS was very prem, so initially we knew about the apnea/desats because he was hooked up to monitors and the sats numbers literally went through the floor as he fed so there was a clear cause and effect. The apnea came later a few days after DS was home and to be honest frightened the life out of me, as DS fed then stopped breathing. He went purple then blue round the mouth and although he was mid the it hurts cry it was as if someone pressed the pause button on him, what was probably only a matter of seconds later I had manouevred his head airway etc and he started the it hurts cry again (my baby resuss training came in useful) and carried on breathing. His eyes froze when he stopped breathing too.

When we went into A+E immediately after with it they took it all very seriously and checked him over and hooked him back up to the monitors but the worst that actually happened was that he then got hypothermia (a whole different story)

The Paeds were really good and if you think the reflux is causing breathing difficulties at least here you can easily get referred to have the LO monitored for a while so they can tell what's happening with food and breathing. They offered that to us but all I wanted to check was he wouldn' stop breathing overnight while I slept.

Any one got any experience of weaning and reflux? Does it help, which meals are the best for solids? Also I have always given DS his meds before a milk feed anyone know if that's the best way to carry on?

ib Fri 27-Aug-10 16:12:25

Thanks running, I'll take a look.

Hilda - solids did seem to help ds1's reflux a lot.

Helen - omeprazole really helped ds1 too.

RunningOutOfIdeas Fri 27-Aug-10 16:17:08

I think solids did help DD. She was never sick after solids only after milk.

Hilda, what meds are your DS on? If it is omeprazole, it is best given on an empty stomach and as long as possible before food.

Noraginz Fri 27-Aug-10 16:17:32

Has anyone tried a drink of 'Cooled boiled water' before a milk feed. It seemed to work for my son.

hildathebuilder Fri 27-Aug-10 17:42:17

Hi again , my ds is on domperidone and ranitidine with the doses adjusting roughly fortnightly with his weight. We talked to the Paeds about ompeprazole (which DH takes!) but they said because DS had reflux not reflux disease he didn't need it. Gaviscon was also a disaster for us

TheZee Fri 27-Aug-10 19:37:18

Hello, this is a great thread, i have spent so much of the last 6 months desperately googling on my phone during feeds, and there is so much useful advice here all in one place. My dd is just over 6 months now, and things are getting better.

Symptoms:
Frequent vomiting
Pain
V slow weight gain
Constant feeding, and then, later, refusing to feed much

What has helped:
Keeping a food diary, trying cutting out some things from my diet (she was ebf) and eventually working out she had a cow's milk protein and soya intolerance, as well as reactions to a couple of other things (tomatoes, bananas, poss eggs)
No tight nappies or trousers
Keeping her upright, tilted cot, not laying her down flat or squishing her belly too much
Baby bjorn
Eventually, solids - even tho I was very worried about starting before 6 months because of the food intolerance links - I should have done it sooner - and nice dietician at the hospital to help me work out how to get a decent amount of calories in her without dairy
Meds: gaviscon never worked, ranitidine seemed to somewhat for a while, now domperidone and omeprazole (losec) seem to do a pretty good job now, tho it is tricky to time the omeprazole right.

Nina, I'm sure the GP is right that your DS may grow out of it - but my experience with my dd was that the GP and the HV were very supportive and reassuring, but actually didn't have alot of specialist knowledge in this area, and so when i eventually got a referral to a paediatrician at 4.5 months he said she should have been referred right at the beginning and the reflux could have been much better managed... not what i wanted to hear.

I am happy today because at the weigh in this morning she had put on 10 ounces in a fortnight, and is how actually up to the 2nd centile!

helenwombat Sat 28-Aug-10 02:34:04

Well, we gave the omeprazole last night & not the zantac. Had a terrible time - ds inconsolable screaming in pain, 2 hours sleep for us all. My dh was crying, we didn't know what to do with ds.
So we are now doing both zantac & omeprazole as I'm assuming the latter takes a while to kick in?
We also tried 2 tsp of baby rice (on advice of paediatrician) but ds absolutely hated it, made a funny face, swallowed it but cried & sicked it up almost straight away. I'm not sure whether I should just leave it for now & try again in a month or so or try him on something else. My friend said her baby didn't like baby rice unless it was mixed with pear?
TheZee, I've found that most people don't have a clue about reflux. When my ds was tiny I used to walk for miles with him screaming in the pram, not realising that because he was laid flat, he was in pain. Everyone told me 'babies cry' & that he was fine. If I ever have another baby with reflux, at least I will know to raise his cot, upright after feeding etc straight away.
Noraginz - no joy with cooled boiled water - ds spits it out.

Hazeyjane Sat 28-Aug-10 06:57:24

oh helen, sorry you had such terrible night. hope you are managing to get some rest now, and you ds is no longer in pain

ds was up most of the night, but dh was doing the 2-5 shift, otherwise i'd have posted.

dd1 only liked babyrice with pear (it is pretty rank stuff), so maybe worth a go. Sounds like maybe better to wait until the omeprazole has kicked in though.

I really enjoyed doing blw with dd2, i guess that is a no no with refluxy babies, if they are weaned early.

hildathebuilder Sat 28-Aug-10 08:42:55

My DS only likes baby rice mixed with something sweet - pear is proving better than apple. He also won't eat it with formula only with EBM. But then he is not willing to have any formula with anything at the moment!

Hazeyjane Sat 28-Aug-10 09:38:12

sorry, hilda, I forgot to say how frightening that must have been with your ds. Nothing like that has happened with ds, so I guess his grun ting is a hangover from his breathing difficulties when he was born.

have you tried Hipp organic with him, i have tasted most of the formulas, and thought this was the nicestsmile

fiveisanawfullybignumber Sat 28-Aug-10 16:26:29

helenwombat Keep going with the omeprazole, it does take a few days for the effects to build up. what dose are you on? Max dose is 3mg/kg of body weight. However they will only increase when she puts on 2kg at our hospital. Also you don't have to fuss disolving tablets etc, we get it in liquid form, must go in the fridge & has 2-3 week shelf life.
My DD (16wks) was up from 4am to 7.15am this morning, foaming like a rabid child and vomiting profusely. Slept for 2hrs on me then awake from 9.30am till 20mins ago. passed out from sheer exhaustion from screaming in the sling. Dare not move her now.
I blame asda for todays outbursts, can you believe they put milk protein in bloody chicken breast slices?angry Also in their own label tomato ketchup, but avoid that now. Why, for gods sake?????

fiveisanawfullybignumber Sat 28-Aug-10 16:27:53

Forgot to say, started Domperidone yesterday, so now on the big 3 for her. Domperidone, Omeprazole & Gaviscon. Please let it work for more than 2 weeks.

Jacanne Sat 28-Aug-10 23:23:16

We've just started dissolving the omeprazole in a small amount of apple juice - dd seems to take it better (we were struggling to get it in) and it does seem to be working better.

I've noticed that on her sicky days the acid is less of a problem - she's more likely to scream in pain on her dry days.

DD has a white tongue too.

I am dreading tomorrow night - we have to go out to celebrate my parents 50th WA and my MIL is looking after dd. She is really worried about it and has good reason to be as dd is an evening screamer and the only one with a hope in hell of settling her is me

Jacanne Sat 28-Aug-10 23:24:00

Omprazole took a few days with us too - the first few days of taking it were dd's worst to date.

Hazeyjane Wed 01-Sep-10 09:42:33

how the hell does anyone with a refluxy baby get things done?!

Ds is at his screamiest and most uncomfortable at night and in the morning. Which means no sleep for anyone, followed by a frantic morning of trying to get ready wih me either dangling ds from my arm/slinging him or leaving him screaming in a bouncy chair.

from tomorrow i've got to get dds ready for school run at 8.30 - I feel sick thinking about it!

PosieParker Wed 01-Sep-10 16:58:52

Hazey....Get a swing, really gives handsfree time. Either get one on ebay, cheap, or buy a brand new one and sell it on ebay....

helenwombat Sat 04-Sep-10 12:40:16

Hazey I have no idea, I don't get things done! Our nights have at least one 3 hour stretch of screaming, usually starting around 12.30. Feel for people like you with more than one dc; so relieved ds is my eldest/only thus far. He hated the swing we hired.
We've had a rough week. Despite the losec, zantac & solids (which ds loves), the reflux seems even worse. He's now sicking up huge possets of dribble all the time, not just milk. I'm not sure how much more of this in-pain screeching I can cope with, especially in my sleep deprived state. I have headache, backache, mouth ulcers. He goes all stiff & red & I can't do anything except walk around with him until & give him his dummy until he gets better. I know I should just stop whinging & be grateful that ds is otherwise healthy, but I can't help thinking that 5 months should be a fun age. I look at babies learning to crawl or happy watching the world go by from their prams & am so jealous! We have a happy ten minutes in the early morning & sometimes in the late afternoon (depending if I've managed to get him to sleep in the day, usually after several hours perseverance), otherwise its hellish & I'm just wishing the time away.
We have been on the omeprazole a week now, should it be working? Or perhaps the dose is too low?
Also, has anyone tried giving their babies rice milk? Dh's aunt said we should try it as the starch would line the stomach or something?

Athrawes Sun 05-Sep-10 03:05:00

Hi
mine is eight weeks old and a random lady at breastfeeding group took one look and said she thought he has reflux...cue investigation of symptoms and horror that he has them all. Gaviscon worked ok but is such a nightmare to get down that we have switched to rinitidine. My question is, how long does it take to kick in? The gaviscon worked so well and I am dreading a night without it!

Jacanne Sun 05-Sep-10 17:19:54

Helenwombat - some people say that omeprazole can take a couple of weeks to work. I think I'd be wary about the rice milk simply because at his age it might mean that he cuts out real milk and he still needs that to grow - I'm not sure how much goodness is in rice milk. I wondered, as you mentioned the drooling, if he could be teething because dd is drooling loads at the moment - it can exacerbate reflux.

Also, if he seems worse and you have just started the solids it might be worth cutting them out for a bit and seeing what difference that makes? I have often wondered why introducing solids should help with reflux as surely more solid food would need more acid to digest it - I can see that it might help with the vomiting because the food is thicker and therefore less likely to come up but with the actual acid that comes up.....does anybody know?

helenwombat Mon 06-Sep-10 08:40:41

Hi Jacanne, thanks for your reply. We had the weekend from hell, culminating in approx 2 hours sleep last night (2 less than the previous night) & a lot of tears for all 3 of us because ds was eventually falling asleep in dh or my arms & shrieking every time we put him down. Dh took day off work today & we got paediatrician & osteopath appointments. Results v depressing. Paed says that he isn't reacting to the medicines & has no answers as he is otherwise perfectly healthy, we should just slog it out until he is sitting up on his own, when things should improve. Osteopath didn't have a clue about reflux, worst $70 I've spent. He told me to go on a restricted form of the Hay diet (I've already cut out all acidic/wind producing/allergen containing foods) in which I can eat just brown rice, some veg & unseasoned meat but at different times (as if I didn't have enough on my plate). He also told us to take ds' dummy away. There is no way I'm doing this - he is such a sucky baby & its my only saviour on occasion. Lastly, he said just to do whatever works, ie rock him to white noise etc (just what we do already) so that ds could get some sleep. Fine, but what about us?
Anyway, I completely agree with you about both the rice milk & the solids. The former was advice from an aunt who offers non-stop advice & always 'knows best' (talks a lot of rubbish). As for the solids, we had a terrible time last two afternoons - ds screamed & was even more refluxy after. Will try again at 6 months.
I've just ordered some dr browns bottles online, as fed up with all this pressure/stress/guilt on me & my diet as well as ds' breast refusal when tired (most of the time). Also debating whether to hire a night nanny to allow dh & I some catch up. In two minds because I know stress/change of routine can worsen the reflux & it makes me cry to think of ds wondering where his parents are when he is in pain. However, I don't know how much longer dh & I can cope. Fingers crossed for a little more sleep tonight!

Athrawes Mon 06-Sep-10 11:41:37

Hello again. I realise my horror is minor in comparison but still need some advice. I am doubling up the gaviscon during the day and rinitidine at the beginning and end, with the idea of weaning off the gaviscon once the rinitidine kicks in ... But when might that be? My GP can't tell me because he thinks the baby has colic and will grow out of it at 12 weeks - not sure why he agreed to give me the rinitidine in that case, but anyway - I am sure it is reflux as has responded to gaviscon.

helenwombat Mon 06-Sep-10 12:09:31

Athrawes, I was told you should see a difference within a week providing the dosage is correct. We upped the dosage (on paediatricians advice) but haven't seen any change for 3+ weeks, which is why he has decided ds not responding to medication.
Hopefully yours will, however! What is your dosage & your baby's weight?
I know what you mean about the gaviscon being an absolute pain to administer. I gave up with it - so much liquid to give via syringe, it got dribbled out everywhere!
I was also told my baby had colic, now at 5 months its been ruled out but I always wonder whether he had both as he is v windy & hard to burp. Do you keep your ds upright for as long as possible after a feed? Has made a huge difference for us, which is why nights are so much more difficult, I guess.

Jacanne Mon 06-Sep-10 12:49:43

Helenwombat - the cranial osteopath I saw recommended a dummy so don't listen - I think there is a lot of evidence that dummies help reflux babies.

If you're going to switch to the bottle it might be worth asking for a prescription for Neocate - ordinary formula might make the reflux worse as it takes longer to digest than breast milk. Neocate is dairy and soya free - it might be worth investigating wether it makes a difference.

Hazeyjane Mon 06-Sep-10 13:26:14

Oh helenwombat, that sounds like hell indeed. We are getting about 4 hours sleep each a night, and if I eat/drink enough cake and coffee i just about get through the day!

Ds has seemed a little more settled during the day, but night is awful, he will only take a couple of oz milk at a time, then grunts for the next 2 hours.

Does Gaviscon make your lo's constipated? Ds's poos look like the poo of a fully weaned baby, I'm not sure if this is normal.

I'm also confused by the dosage, ds has maximum 4 oz at a feed, but is over 10lb so should be on a higher dosage, however the packet says to mix 2 pkts in no less than 8oz milk? If I mix up 8oz and store half in the fridge it gets really thick, is this ok?

I think sleep deprivation is stopping my brain working properly!

Athrawes Mon 06-Sep-10 21:23:46

Gaviscon makes mines poos like playdoh - not constipated just a darn sight tidier in the nappy. I was told and checked with pharmacy, not to store made up Gaviscon, to make it fresh every time.
If rinitidine does not work I may stick with gaviscon. I have been mixing it up with 5ml rather than 15 and that is a lot less hassle to get in.
Is hiccupping after every feed a reflux feature?
Have finally gotten mine to take a dummy and keeping that stuffed in for the evenings really helps-when he wants to be awake but needs distracting - he sucks so hard and with such concentration it is funny!

tooloudhere Thu 09-Sep-10 20:43:17

hi, I am on my third refluxer, my who is now 3 weeks old. Doc just prescribed ranitidine for him. Can I ask what dose ranitidine people have had prescribed for their little ones as the doc has gone straight in with what I think is quite a large dose for a teeny weeny one.

organiccarrotcake Sat 11-Sep-10 19:23:22

DS2 is 11 weeks almost and my second refluxer. First was a happy chucker - chucking 4' regularly. I weened him at 4 months from EBM and really regret it as at 5 yrs he has bad eczema and cow's milk intolerance. I early weaned on the advice of the HV as she said it would likely help the reflux, which it did, but as it wasn't bothering him (just creating lots of washing for me!) I should have just waited

DS2 doesn't do the PV thing but does throw up a lot. He's very unhappy with it though. IG is helping a lot, as is a dairy-free diet for me. He's EBF and I can't risk formula even if I wanted to, which I don't, because of the history of allergies (many people in my family not just DS1).

Can someone tell me what causes the white tongue? DS2 has that.

Any tips for dealing with the constipation caused by IG?

JoandMax Sat 11-Sep-10 20:08:25

Just seen this thread, what a great idea!

My DS2 has severe silent reflux which started about 5 weeks and has got progressively worse since then, he's now nearly 6 months. He has also started vomitting in the last few weeks so we're pretty desperate and knackered!

He is on Ranitadine, Gavison, Omeprazole, Domperidone and also Erythromycin (similar to domperidone in effect). He stopped feeding a few months ago so after numerous hospital trips and stays he now has an NG tube which has at least made us able to ensure he is hydrated and maintaining his weight, even gaining a tiny bit some weeks.

He is very skinny, ribs and hip bones on show and sleeps very badly - lots of groaning/writhing so I am exhausted, also have an active 2 year old so things are hard.

We are seeing the dietician on Monday to discuss weaning and also a high calorie supplement to add to his Neocate. Also seeing paed to discuss surgery as nothing else is working.........

I am so so sad by it all, I remember the first 6 months of DS1s life and it couldn't have been more different. I hate not knowing what to do, how to help. Most of the time I try and be positive and have as normal a life as possible but it sometimes gets too much and I have a major cry!

I'm very sorry so many others have to suffer with this - my top tips would be:

Cans of full fat coke and kitkats!
Having a good cry
Asking and accepting help - I found this hard but am so glad I did, even just asking my mum to come over for a few hours to help makes it so much better
Keep repeating 'this will get better'
Realising it's not your fault and reminding myself that my lovely baby won't remember this

Hazeyjane Mon 13-Sep-10 11:27:04

is it possible for gaviscon to suddenly stop working?

ds suddenly screaming alot, not feeding well, not sleeping at all, poos are a lot softer than usual.

i thought the gaviscon was starting to make a difference, but now he seems worse than before.

helenwombat Mon 13-Sep-10 12:55:48

JoandMax, poor you & your ds. That sounds terrible, but it sounds like you have some good coping strategies. I sincerely hope it gets better for you two very soon - it should do, everyone I have spoken to says things start to subside around 7 months (I'm counting down).
I am very lucky in that when my ds does drink, he guzzles, so is putting on weight. Unfortunately, the guzzling (& refusal to take breast when not full to bursting) makes the reflux much worse. I was finding that feeding him a bottle held horizontally improved things a lot, as he had to drink slowly, but he has realised what I am doing, grabs the bottle & holds it vertically! He is such a strong boy, it is a battle to wrestle it from his grasp! Every feed ends in screaming & today was a sicky day. We had sick 2 hours after a feed.
On refluxy days, ds has his dummy permanently in his mouth. He has even learned to put it back in himself. Makes me a bit depressed to see him always like this, dummy stuck in, but it makes him happy!
Jacanne, I will look into neocate or a similar formula (we are in australia). I use a hypoallergic one now, but it is dairy based. I am still half/half bf & ff at the moment.
Off to bed now - so hoping he sleeps a bit better.
Hope you all had a good weekend.

emmylou157 Mon 13-Sep-10 16:52:42

hi,
currently sat here with dd over my shoulder both of us covered in sick, but she is falling asleep so can't risk moving her to change our clothes.
She is 6 1/2 weeks old and has the following;
- vomits regularly fresh and curdled milk
- writhes in pain during and after feeding
- constant dribbling
- white tongue - which is always sticking out
- when lying down makes retching/barking sounds
- hiccups a few times a day - she has these most days while I was pregnant too.

GP has prescribed gaviscon but im not sure that it makes any difference - also very difficult to get it into her after feeds as she is full and tends to just spit it out (I am bf).

Just wondering if anyone could help me out with the following questions;

- how do you raise the head of moses basket matresses?
- what baby swings do you recommend?

thanks

emmylou157 Mon 13-Sep-10 16:53:11

sorry another question do dummies help?

hildathebuilder Tue 14-Sep-10 09:52:23

hi, we always just placed the head of the moses basket on a pile of books. We have a Graco baby swing which is fab, and for us no a dummt didn't really help but then DS has never really liked his dummy.

Separaetly I just wanted to add my voice to this will get better. At the end of August I was at the end of my tether, DS was struggling, I had no more than 2-3 hours sleep at a time for nearly 6 months and was tearing my hair out.

Fast forward 3 weeks, DS is sleeping through, he is in a routine, and on the advice of the paeds we are weaning him of domperidone (but not ranitidine) as apparently it actually only has a benefit for 12 -16 weeks after which the impact declines. DS has never been much of a chucker so we have gone with that. I think weaning is also helping.

I suppose the point of this post is to say hang in there

nickytwotimes Tue 14-Sep-10 10:19:41

Hi all.

Things here are improving. smile Slowly, but improving.

Dummies are thought to be helpful as they produce extra saliva to neutralise the acid.

We have a Graco Loving Hug swing. Got it on Kiddicare and would recommend it and Kiddicare too. Doesn't always work, but when it does it is great to have half an hour of quiet.

JoandMax Tue 14-Sep-10 10:42:57

Just a quick post but dummies really help my DS, was unsure about using one but have never looked back!!

Saw paeds again yesterday and DS is losing weight now so we are being readmitted on Thursday..... They think they may be missing something so want to do more investigations (DS also has hypotonia and some problems with deep chest recession so possibility a heart problem too, great)

Feeling sad but relieved as much as I hate being in at least each visit is a step closer to finding a solution.

All the best to everyone in the meantime and hope all the improvements keep on getting more and more x

emmylou157 Tue 14-Sep-10 16:55:37

Thank you for your tips. Just back from the doctors they have prescribed domperidone and ranitidine. DD has now stopped gaining weight so hopefully this will help.

organiccarrotcake Tue 14-Sep-10 20:50:53

What do domperidone and ranitidine do? My GP says that IG is the only option and as he's not having a problem gaining weight he won't refer him to a paed.

emmylou we give IG before feeds not after, in a bottle made up with the minimum water we can and topped up with EBM. Ours is exclusively BF - it works ok.

nickytwotimes Wed 15-Sep-10 06:37:53

organic - IG is the only one my gP would give (you can get it OTC too, btw) as the others are not licensed for wee ones so usually need to be prescribed initially by paed. SOme GPs prescribe them, but none here do.

If ther reflux is caueing your child discomfort then there is basis for referal. Weight gain is only part of it. Many refuxers are big as they comfort eat.

Ranitadine is Zantac - H2 inhibitor, reduces acidity. DOmperidone speeds things through the gut so less comes up. There is also Omeprazole a ppi inhibitor which reduces acidity in a different way.

WhatSheSaid Wed 15-Sep-10 07:02:26

Oh I've been looking for a reflux thread, I thought there must be one.

Dd2 (9 wks) was diagnosed with silent reflux last week and I'm friggin shattered grin

She is on ranitidine. She's not so bad in the day, sleeps mainly in the pram or her bouncy chair. Nights are hard though - waking 6 or 7 times sometimes. I've done all the cot-raising stuff and she's sleeping on her side in a wedge-y thing.

First few nights on ranitidine she was much better but last couple of nights not so good.

Have to go as dd1 wants me to do a puzzle..she is nearly 3 and doesn;t sleep in day any more...so no breaks for me!

emmylou157 Wed 15-Sep-10 22:09:13

How long did ranitidine and domperidone take to work for you? Gp has just prescribed them both but she didn't say how long they would take to work/when to go back or anything.

fiveisanawfullybignumber Thu 16-Sep-10 09:24:58

Give them a week to establish effects.
DD is on Omeprazole and Domperidone. Ranetadine didn't do much for her, but works well for others.
Also google AR sleep wedge. It's the only thing DD sleeps comfortably in/on.

Hazeyjane Sun 19-Sep-10 23:40:43

ooh lost the thread.

ds saw consultant last fri. he was happier and smilier than he has ever been, whilst we sat there saying how unsettled and unhappy is is!

she said to try him on enfamil ar, has anyone had any success with this, for silent reflux?

so far he has screamed more than ever, and every time he has a bottle it is like i am torturing himsad, but maybe it will take a while to make a difference?

organiccarrotcake Mon 20-Sep-10 00:32:23

IG caused bad constipation. GP given laxative and refused a paed referral. I've not had it made up and have stopped the IG, dropped dairy from my diet and are seeing what happens.

Bub seems fairly settled but V sicky. Maybr dairy-free makes him more comfy. I can handle the sick if it doesn't bother him - don't want to medicate for my convenience.

Thoughts?

Hazeyjane Mon 20-Sep-10 07:07:28

help,anyone - please

ds screamed all night and is screaming still, tears pouring down his face.

this can't be right, right?

nickytwotimes Mon 20-Sep-10 07:14:36

hazey - posted on your other thread

JoandMax Mon 20-Sep-10 08:35:09

Hi Hazey,

No,that's not right you poor things. Get to the docs and get them to refer you up to the hospital. I wish I'd been more assertive sooner

Big hugs xxx

sleepywombat Mon 20-Sep-10 12:51:37

Good luck Hazey, so sad to see those tears. My ds has had nights/days like that too. Hopefully medication works for your ds. Let us know how it goes.
We've just been told by the paediatrician to 'ride it out', as nothing seems to be working (he is still on the zantac 1ml 3x a day, perhaps making things a bit better). Its horrible. Every time we have a good day, I think things are improving & then it all goes to pot again. Ds is definitely better when he has sleep but he won't sleep when he is in pain, so tired of this vicious circle!
Hazey re your previous post, my ds does that too, crying all day at home & then all smiles & gurgles for the health professional! Sod's law!

Hazeyjane Tue 21-Sep-10 22:54:05

Thankyou for your replies.

Have stopped giving ds the milk, and am now going back to just formula, until we can see the dr and see what she says.

Dh and I have been tying ourselves up in knots trying to stop ds crying, it is horrible and exhausting. When he smiles it is like the sun coming out, but he doesn't smile very often.

I don't want to wish any time away, but I so want ds to be happy and comfortable.

WhatSheSaid Wed 22-Sep-10 01:22:42

Hope he improves soon Hazeyjane. It's horrible seeing your baby in pain.

nickytwotimes Wed 22-Sep-10 07:41:15

Hi hazeey.

Hope things are better soon.

SOunds like he needs tha acid-reducing meds like Ranitadine/omeprazole. You may need to push for them though. It sometimes seems that unless a baby has something life threatening, some medics are content to leave them and their parents to it. I have to say we have been very lucky, but lots of people really struggle to get taken seriously.

barkfox Wed 22-Sep-10 09:14:30

Hi - if anyone can help at all with the following, I would be v grateful. I have a 10 week old DS, who was diagnosed with reflux (not the projectile kind, the other one) last week, and was prescribed Infant Gaviscon.

He is EBF, and we are using a syringe to dose him half way through or after a feed.

IG has done a very quick job of sorting out the unhappy regurgitation, and we see very little of that now - however, since day 1, it's made him constipated.

Previously he poo-ed frequently (10 times a day plus), and very explosively, and it often seemed quite distressing for him. |I wondered if it was related to the reflux. During the 1st 24 hours on IG, he stopped pooing completely before painfully producing a bright green thick pastey poo(I kid you not - Kermit coloured). We have reduced the dosage, so he's now taking a 5 ml squirt of IG after each feed, which just about keeps the reflux under control. He had a few days of one poo a day - a fairly happy korma-style effort.

However, we are now on day 3 of no poos at all now. I have a straining red faced baby who starts crying after each unproductive straining session. Can't blame him. He is farting normally, which keeps sending us scurrying hopefully to the changing table - but no poo.

Has anyone else had a constipated baby on IG, and did you find anything helped? I am going to the doc this morning about my 2nd bout of mastitis (it's all fun in this house...), so will mention it then, and it may be that the antibiotics I'll be on will loosen him up a bit. I dunno.

All thoughts gratefully received. TIA.

nickytwotimes Wed 22-Sep-10 09:34:58

bark, yes, ig makes them do pastey poohs. Made my ds so constipated that it became no good as the more he strained, the more he refluxed. Some people use lactulose to balance this out with success.

barkfox Wed 22-Sep-10 13:19:22

Thanks nicky - will investigate lactulose. GP recommended a small spoonful of orange juice, so we'll see what that does....

fiveisanawfullybignumber Mon 27-Sep-10 07:49:59

Well, we've had a breakthrough here.
Most of the acid had cleared up although we were still getting lots of sick, even with Omeprazole, Domeridone and IG. I'm dairy/soy free and DD is entirely BF, started some basic weaning.
I've now cut wheat and gluten out of my diet and made sure there is none in her weaning diet. We seem to have stopped all the windy cramping that she was still struggling with.
Still sickly, but sooooo much happier and now sleeping 10-6 straight through!grin

Hazeyjane Fri 01-Oct-10 07:49:35

aah, lost thread for a while

ds seemed so settled for about 4 days, then suddenly started screaming like a banshee, and hasn't stopped. Thankfully, during his settled period the dr prescribed Ranitidine - just in case.

We started giving it to him last night, does anyone know how long it takes to work? Are there any side effects to look out for - wind? constipation?

It was so lovely seeing him smiling in those few days when he was all settled, it reminded me that babies can be happy to be put down.

He has started to slip down the centiles, because he will only take a couple of ounces a time. Hope everyone else is ok.

BTW if anyone uses Enfamil AR, I have a couple of unopened tins, I can stick in the post - message me if anyone is interested.

ellnlol Fri 01-Oct-10 14:25:32

Just found your lifeline... thank you so much. For the first time I don't feel like the worst Mum in the world cos our dd cries so much. DD is 8 weeks and diagnosed 10 days ago - she's not sick so we didn't put 2+2 together, but most of the other symptoms are soooo familiar. She also beats me with her fists while screaming cos I can't stop the hurting. So feeling good about myself so far. Went to a parent group for a bit of cheer up and support but loads of smugs who explained how easy, happy or cry-free their babies were. Came home and cried.
She's BF and on Gaviscon, the purple faced screaming and constant liquid poo has stopped (in fact, all poo but other symptoms still here.
Will definitely keep a 'cry log' cos I know it's not all the time, but it feels like it - fab idea, thanks.

barkfox Fri 01-Oct-10 19:04:31

Just wanted to report back that the teaspoon of fresh orange juice a day seems to have helped my 11 week old Gaviscon-constipated baby -

We are currently getting one (massive) soft poo a day, or one (even more massive) soft poo every other day, and while he does still have some big colicky episodes, producing the actual poo itself seems quite a casual and painfree business.

He went from doing umpteen explosive liquid poos a day to zero when he was prescribed IG, so hopefully the orange juice regime has evened things out....

WhatSheSaid Fri 01-Oct-10 19:24:56

Hazey some people I know say Ranitidine made their babies very windy, they recommended gripe water and/or Infacol to help with the wind (both over the counter things, not sure if they're called the same in the UK? I live abroad).

Dd is on Ranitidine, sometimes I think she is more windy, sometimes she seems fine. She is still quite unsettled at night but better than she was. I have tried gripe water but all that seems to happen is she gets really explosive poos.

Ellnol, it's hard hearing how "easy" other people's babies are, isn't it? A few nights dd has been awake every hour and when I hear about someone's baby sleeping for 10 hours it does make me feel quite upset - silly, I know, but that's what sleep deprivation does - makes everything seem worse. I keep telling myself, this won't last forever, she WILL get better/grow out of it at some stage!

Hazeyjane Sat 02-Oct-10 06:27:45

Thanks, whatshesaid - I will watch out for the wind. We are giving ds 0.5ml 3 x a day, I hope it starts making a difference soon - yesterday was a long day of having to carry ds around, screaming a lot, whilst having to look after dd1 who was off school and dd2 who is going through e very naughty phase (probably because ds gets most of my attention).

Ellnol I had exactly this conversation with a mum lst week, and we were saying how hard it is to watch someone feeding their baby, happily, then watch it gurgle and coo, rather than writhe and scream in agony. I know when I had dd1 - who was also a nightmare to feed, I was so happy when I found someone in rl, who also had a hard to feed, windy baby - we are still firm friends 4 years on.

Barkfox - good tip about the orange juice, I wish I had known that when ds was in IG, it made him very constipated, if he did do a poo it looked like a lump of plasticine, and made other mums gasp!

gaelicsheep Sun 03-Oct-10 22:44:45

Wow, what an amazing thread! Someone confirm please, are foaming at the mouth, sticking tongue out and white tongue REALLY reflux symptoms and not just something all babies have/do? If so, then I'm now convinced about DD. We were thinking she'd contracted rabies or something...

I went to bed last night thinking about the possibility she has reflux and I just cried at the thought of her being in pain much of the time. Does anyone else's baby seem happy much of the time but just turn to screaming in an instant for no apparent reason? That's what first got me thinking that she must be in some kind of pain that comes in waves.

DH and I are both exhausted as DD sleeps for no more than 20 mins at any one time, and that's only two or three times a day. The rest of the time she did need holding almost the whole time. Thankfully this is getting a little better now that she can be propped upright. She's been spending the last 3 or 4 weeks (she's 15 weeks) absolutely determined to get herself upright come what may.

How did people find it getting their GP to recognise the problem? My HV has already dismissed the possibility weeks ago, hence my only considering it again recently when my mum said that her behaviour really was not normal.

gaelicsheep Sun 03-Oct-10 22:46:58

Sorry, should have said 20 minutes at any one time during the day. At night she'll go longer - thank God!! Otherwise we'd both be in the loony bin!

sleepywombat Mon 04-Oct-10 12:04:14

Ellnol, feel exactly the same. On walks/out with heavy screaming ds in sling, I used to look enviously at all these babies lying peacefully in their prams. I also found that people don't understand, have had so many 'all babies cry', 'have you got pnd?', 'oh yes, mine had reflux, just buy a few more bibs' type comments. I spent the first 3 months of ds' life in the house because I couldn't bear to deal with the screaming in public. Everyone told me I'd feel better if I went to mothers' groups, but it was far worse - I had to go outside because nobody could hear each other. Ds was always overtired too & wouldn't sleep unless I was walking with sling so we couldn't sit with the group.

gaelicsheep, apparently those are symptoms, although my refluxy ds only had white tongue & did the tongue out thing when he was tiny (until 2 or 3 months) & no longer showed these symptoms when the reflux peaked at 4 months. Having said that, a doctor did comment on his tongue being out when he was just a newborn, said it was 'strange'-we used to say he was 'testing the air'.
I was told that all babies have white tongue before they get saliva because they can't wash the milk off themselves. My ds has so much dribble, I don't think his tongue could stay white for long.

Good news here - ds is 6 months & things are finally improving! He is still on the ranatidine (tried taking him off it & things went to pot), but so so much better, as before, none of the medicines were working. For the last week I have been able to feed him to sleep for the first time ever! I know some people see feeding to sleep as a bad thing but for us it is a breakthrough. He used to be so uncomfortable after a feed that it would take 2+ hours of rocking/white noise/patting/singing in the middle of the night to resettle him. Now when he wakes (still 4 times a night - baby steps!), I can feed him, put him in his bed, a few wiggles later he is asleep! He can sit up independently now, which I'm sure has helped things too.
He is on 2 solid meals a day, which he loves. We're just giving him fruit & veg from my anti-reflux breastfeeding diet to be on the safe side. He still throws up milk (but never solids) from time to time & screams in pain if he lies down flat/goes in his car seat too soon after a feed, but otherwise we are all happier.
So those of you with younger babies, take heart, it does get better!

ellnlol Mon 04-Oct-10 12:54:13

We also had 'random' extreme cries/screaming as if a sudden pain had come on which broke my hearts. Not sure if all babies foam and stick out their white tongue (this is our first), but our consultant said the writhing/back arching and 'barking' definitely gave silent reflux away. We got referred to hospital by GP for unrelated eye infection and he picked it up immediately - no help though if your GP isn't interested, though I think you can ask for a paed referral if you're not happy. Our HV also dismissed anything more than colic and said most babies were difficult to settle in the evenings - don't think she heard any of what I had actually said!
Our dd also headbutts my shoulder and rubs her face into my clothes frantically like a dog with a bone after feeding. Does anyone else have this?
Keeping her upright helps, as does frantic bouncing/dancing/silly walks across the kitchen and making up songs about the rare and long awaited appearance of poo - helps us keep our sanity too (sometimes) We were managing 40 minutes at a time (better at night) for a while, and were so tired we were seeing double, but she's a little calmer recently. She's 8 weeks and I can't find a pattern at all - 2 days running is a trend for us! People keep saying you'll look back at this phase in your/her lives and laugh - here's waiting wink.

gaelicsheep Mon 04-Oct-10 22:30:11

All I can say ellnol is that my first didn't foam at the mouth. He didn't stick his tongue out either, but then it later turned out he had tongue tie so that doesn't mean anything. DD definitely doesn't have tongue tie!

WhatSheSaid Tue 05-Oct-10 08:01:39

Gaelicsheep yes my dd foams at the mouth and sticks her tongue out too. Def signs of reflux (though not all babies with reflux will have those symptoms). Sorry your GP not helpful - I was lucky with mine, her special area of interest is children's health so she was really on to it .

Ellnol yes dd headbutts me and rubs her face on me (leaving a trail of regurgitated milk sometime - nice grin) - she usually just does it at night,when she is going back to sleep (or I am trying to get her back to sleep).

Dd much the same here, ok in day but quite unsettled at night. Am co-sleeping from about 1am onwards as it's the only way she'll go abck to sleep and stay asleep. Not a huge fan of co-sleeping but just have to at the moment, only way any of us can get any sleep.

mangomilkshake Thu 07-Oct-10 11:10:30

hello, so pleased to find this thread!

I suspect my little one has reflux, he has following things going on:
hiccups after almost every feed (he used to have hiccups everyday in the womb too)
difficulty burping, and when he does do burps they sound kind of 'wet' if that makes sense,
foaming at the mouth
white tongue, and sticks tongue out
wants to be held upright most of the time
he pukes once or twice a day, sometimes yogurt (digested milk) and sometimes along with a burp after feed,
arches back.

However, he is sleeping well in the night (at least 6 hours stretch) and napping in the day and is not screaming and crying as describedby a lot of others here so that's why i am not sure if this is really reflux, or is it a mild case of it? he is putting weight on, feeding and pooing and weeing, and cos of this i've been told that the symptoms i've described are just normal? e.g. white tongue cos he is breastfeeding, hiccuping cos his stomach is growing, arching back cos he's stretching??

has anyone managed this problem in their babies without drugs?

gaelicsheep Thu 07-Oct-10 21:08:23

OK, so I spoke to HV who (finally) agreed and sent me to GP to get IG, which I now have. Is it normal for GPs to talk about colic and reflux as if they're interchangeable. DD, of course, was the model settled baby while we were there. She's actually been more settled generally today, so I'm wondering if I should or shouldn't try the IG tomorrow.

She's EBF - no bottles as I can't express enough just now - and it sounds like a right faff. The GP said give it on a spoon or in a bottle after feeds. She will take a bottle but I can see her spitting one out if it contains IG. So that leaves a spoon, but I nearlt choked her giving Calpol that way.

What do others do, and do you reckon it's worth it? I read that breastmilk itself is a natural antacid so am I better to just feed her when she gets an attack? She doesn't spit up that much - it's a wahing problem, no worse.

gaelicsheep Thu 07-Oct-10 21:12:08

I should clarify, the spitting up is a washing problem, but the pain is clearly affecting her. She will barely sleep in the day and cries a lot if not being held.

Jacanne Thu 07-Oct-10 21:35:53

I tried IG with my EBF baby but it just made the sick slightly thicker - didn't help with the acid at all - it kind of felt like something we had to try before they would consider giving us something stronger. Anyway - dd won't take a bottle so we gave it in a nurofen syringe I think.

BM is natural antacid - I think that's why some BF babies with reflux get quite big or are very sucky.

Jacanne Thu 07-Oct-10 21:37:27

gaelicsheep, your dd sounds alot like mine - she barely sleeps at all during the day - and then only on me and she hates being put down. Can you asked to be referred to a paediatrician?

gaelicsheep Thu 07-Oct-10 22:03:50

The GP seemed to poo poo a syringe - not sure why. I think we'll probably try that - can you just get one in a chemist?

I guess I'll need to give the IG a go before asking for a referral, but interesting to hear your experience. I was in two minds whether to say anything, as I'm so used to DD now I didn't realise anything was unusual. It was my mum pointing out that I had nothing like this with DS, and then reading everyone else's experiences that made me realise something was up. It's exhausting isn't it?

ellnlol Fri 08-Oct-10 21:04:49

gaelicsheep we got syringes from the hospital but needed more to rotate the sterilising so just bought them over the counter at a supermarket pharmacy. It works best for us if we squirt the IG into the inside of dd's cheek, about 1/2ml at a time, rather than aiming for the back of her mouth which causes her to cough and splutter or onto her tongue cos she just spits that out! We only make it up in 5ml of boiled water so it goes in quite quickly and she seems to quite like it. We've just moved from 6 times a day to 4, on our HV's advice so she's pretty loud just now but if we can reduce it will make life better for all of us - seem to spend our lives clock watching, calculating when she last had/can next have/should feed etc. My brain was exploding grin. She also only seems to sleep well if being held on a shoulder, otherwise it's really restless, grizzly sleep. Spent that last 2 nights sitting up holding her as she's exhausted - so are we, and going slightly mad!! Hope tomorrow's better.

WhatSheSaid Fri 08-Oct-10 22:10:24

Mangomilkshake - yep all those symptoms sound like reflux! Some cases are more severe than others. And it can affect some babies more in teh day than at night - I have friends whose baby has reflux and is really unsettled/sleeps badly in the day but then sleeps 10-5 at nights <jealous emoticon>

Gaelic we use a plastic syringe for dd's ranitidine, just bought a couple from the chemist and wash/sterilise them every day ( have a v quick microwave steriliser). Actually (baad mother alert) I wasn't sterilising them at all at first, jsut washing them...then I realised it could be a good idea to sterilise them now and again...

One of the reasons my dr didn't give us Gaviscon was because she said it is such a faff to administer to a BF baby - expressing etc. I expressed quite a lot with my first dd but I'm a bit shorter on time now with a 2 year old to look after too!

WhatSheSaid Fri 08-Oct-10 22:12:51

Oh I meant to add..this is quite a useful site, from New Zealand (where I live) all about reflux - lots of info about symptoms, case studies etc... don't know if all the medical info is the same as the UK but still worth a look

www.cryingoverspiltmilk.co.nz/

ellnlol Mon 11-Oct-10 11:35:55

Help/advice question, please... Has anyone tried any of the sleep positioners, and did they work? JoJoMamanBebe advertising one that looks as if it stretches their back rather than just stops them rolling over. We HAVE to get more than 40 mins snooze at night, for all our sanities. 9wo DD will only drop off upright on one of our shoulders, then we might be able to put her down kind of propped on one side with rolled up blankets (she's in a sleeping bag) in a crib propped at one end. She's ok for 40 or so minutes, as long as we keep rocking the crib, then starts making the awful retching/barking noise again, which escalates if we don't pick her up. Can't believe a sleep positioner will actually help, but willing to try anything if people have found them useful? She's asleep just now on her front over a cushion, which I know is a big no no, but I'm watching her like a hawk - no help for my sleep/stress level but she's relaxed grin.

gaelicsheep Mon 11-Oct-10 21:01:10

Ellnol - I thought about a sleep positioner to allow DD to sleep on her side in the early weeks, as it was the only way she'd settle. But I read something, I think it was on the FSID website or similar, saying they were risky because baby could slip down and suffocate between the side wedges.

I can't find the thing I read now, but google "sleep positioner risk".

driedapricots Mon 11-Oct-10 21:25:57

hello, i too am SOO pleased to find this thread. all the symptons match and i'm going straight to the docs tomorrow to demand some baby gaviscon! i've not read all posts, but does refusing to feed also figure amongst the symptons. my ds has about an ounce at a time if we are lucky ...fortunately he is still putting on weight (slowly) for now, but it's a miracle as he seems to feed so little. but it's as if he's not hungry too...rarely cries for a feed... he has also had a runny nose since birth pretty much and i see that's related.... i think my ds has only a mild case - although it seems to be getting owrse..not sure he was so bad a few weeks back, is this normal for it to develop over time rather than something they're born with?

gaelicsheep Mon 11-Oct-10 21:29:22

Hi driedapricots. Yes to feeding problems (due to pain, poor wee things). And yes it often gets worse than at birth before getting better.

katiecubs Sun 17-Oct-10 11:08:06

Hi - wondering if anyone can help? I'm having terrible feeding problems with an increasingly grumpy baby and it's breaking my heart to see him like this!

It all started 4/5 weeks when he would start fussing at the odd feed, pulling off the bottle screaming but still hungry. It's gradually got worse and is now like this at all feeds and he will now only take 2/3oz at a time (he's 9 weeks) where as he used to take 4/5oz.

i've asked the HV and GP but they don't seem to think it's reflux because he is still quite happy to be laid flat - he always smiles and coo's when i take him to the clinic the little trickster!

Over the last week things have been increasingly bad and he has started being sick alot more, not huge amounts just a few mouthfuls of undigested milk after feeds. He also splutters, coughs and gets bad hiccups which seem to upset him. I'm at a loss as what to do as i can't bear to see him in pain.

He is still putting on weight, or was, not sure now as things have gotten worse. Does this sound like reflux to you or could it just be a fussy phase? I've got a GP's appointment on Tues but not sure if they will help unless he is losing weight?

Katie x

lucyflawless Sun 17-Oct-10 21:37:00

Sorry to come along and interrupt. I have some Dr Browns bottles for FFP. I'd really like people to have them who are struggling with their baby's feeding (as mine did). They really worked for us (along with comfort formula). Happily my 11m old grew out of it some months ago but I can remember the agony. Please PM me if you're interested. I don't have this topic in active convos.

I think I have 8 bottles so could split them up?

Jacanne Tue 19-Oct-10 22:19:18

My dd's reflux has taken a sudden turn for the worse and she seems to be experiencing many of the symptoms that she had pre-medication. She has also suddenly developed frequent watery poos (she was one of those BF babies that could happily go 5 days without a poo previously). She is teething (judging from the amounts of drool and constant hands in mouth) - could this be the cause - I have read that it can make reflux worse?

cardamomginger Wed 20-Oct-10 13:10:56

thanks so much for this thread! helped me work out on monday that 3 week old dc1 has reflux - confirmed by gp tuesday, started on ranitidine and consultant's appointment this friday. looks like may be lactose or cow's milk protein intolerant too.
so grateful for everyone's posts - will post more later
good luck everyone
xx

Ladybiskybat Wed 20-Oct-10 19:57:14

I cant believe Ive only just found this thread! Ds is 17 weeks and was diagnosed with reflux at 10 days and have been looking all over the web for something just like this! He projectile vomited most feeds from birth and ended up in hospital as they presumed pyloric stenosis. When scans for that were clear we were told it was reflux and prescribed ranitadine and domperidone and discharged. He never had any of the classic reflux symptoms they told me he should have...arching his back,crying, refusing feeds etc(he gained just under 1lb a week until he was 10 weeks or so). I reckon he was one of these happy chuckers. We took him off both meds at about 6 weeks after chat with (fab)gp as he didn't seem in any pain with reflux but meds caused tummy ache and didn't stop the proj vom. He€ stopped being sick about 4 weeks ago but since then he has been having all of the classic symptoms of silent reflux...pulling away and refusing feeds (he's ebf) and crying lots more than normal. Have noticed he wont feed properly lying on his right so have to rugby ball for left boob. Didn't know about foamy spit and tongue poking being reflux symptoms and he does both of those, also really wet, full body hiccups. He really seems in pain now poor little man. I just wondered if anyone else had ever had anything similar. Im off to hv tom and am sure she'll say to wean him but im not sure. I feel like Ive lived at my gp surgery since ds was born and although gp very good never trust answers as much as I do from other mums! Thank you all so much, katie x

fiveisanawfullybignumber Wed 20-Oct-10 20:46:59

Ladybiskybat, sounds like he needs the ranetadine back. Domperidone only affects the speed at which their bodies process food/milk. Ranetadine helps to neutralise the acid, was never strong enough for my DD. She's on Omeprazole which prevents her body producing acid.

gaelicsheep Wed 20-Oct-10 22:13:52

Oh dear, so after a week on IG DD has the constipation. Two days ago she cried amd cried to pass two little pellets of playdough, the same today for one. Her poos were so runny before this I've no idea if this is the extent of her solid waste or if its all sitting in her tummy. Several aborted attempts at giving cool boiled water (safe to say it's a good thing I don't have to be organised enough to bottle feed). I've pretty much stopped the IG but no change with the poo. I guess the poor thing's pretty bunged.

DD's symptoms seem to have changed since starting IG and haven't changed back on stopping. I guess I wonder if she's outgrowing the acid reflux naturally. She's not screaming so much, still won't sleep much (but IG didn't change that anyway), but now seems to chuck up milk immediately after a feed ie before I could get near with IG. Less chucking in between.

Has anyone else's DC got better by themselves at around 4 months, or is this still residual effects of the IG? ie should I keep giving it or not? I do not want to end up giving laxatives as well.

Ladybiskybat Thu 21-Oct-10 04:53:31

Gaelicsheep-my ds was same with IG, he'd throw up either too soon before I could give it too him or if I did manage to give it he'd throw it right back up anyway. Needless to say it didn't make any difference to us so didn't get to affect his poo. Im bf too and found that the doseage seemed huge to give on it's own. I dont think you said how you're giving the water but have you tried by a syringe? That worked a treat for us when Ds was refusing feeds completely.

fiveisanawfullybignumber Thu 21-Oct-10 11:59:43

We're BF here also, I give infant gaviscon in a bottle before a feed.
It helps to thicken the milk in baby's tummy and tries to keep a lid on the posseting. I found it used to thicken and slightly reduce the amount of sick, but didn't do much for the pain.

gaelicsheep Thu 21-Oct-10 16:48:15

I was trying the water in a bottle, which she will take just fine. But the first time I noticed a piece of something (rice?) floating in the water that had survived dishwashing and sterilising (yuck). Then the next time I tried I discovered the teat on the bottle didn't work. I'm just not used to sterilising in bulk any more, so both of these resulted in aborted attempts! Anyhow she took 1 oz of water this morning, but I'm not sure if that's enough to make any difference? She's still very bunged. Would prescribed laxatives really be less harmful than a little diluted juice for a 4 monrh old?

BollocksToThis Fri 29-Oct-10 11:02:10

Marking my point, may be back later.

BollocksToThis Fri 29-Oct-10 11:04:07

OK quick cos she's crying, haven't time to read - can these symptoms start at a few weeks old, ie around a month of age, but the baby's been OK til then?

TheUnmentioned Fri 29-Oct-10 18:13:02

can anyone help? dd is 5 weeks old, she is generally a pretty happy baby, good feeder (breast + bottle), ok sleeper, BUT she sometimes arches her back during feeds,wants the bottle but cries when given it, projectile vomits HUGE amounts every now and again - sometimes pure milk but more often than not curdled milk or mucussy looking stuff. She is gaining weight ok (isnt sick every feed).

Health visitor says it cant be reflux because it isnt every feed.

Also what do you all do when youre feeding in cafes / at people's houses? I am so nervous when out as for example this mroning she was sick and it went about 2 feet in distance, if that had been all over someone's house Id feel awful!!

wannabeglam Fri 29-Oct-10 21:04:08

bump

gaelicsheep Fri 29-Oct-10 22:18:33

Bollocks - yes

TheUnmentioned - your HV is not correct. It sounds very much like reflux. I should go to your GP, especially to check that the projectile vomiting isn't a symptom of anything else.

Well I guess we have our answer re DD. 10 days after stopping IG, her bowels are back to normal and all her symptoms have returned. sad So that's the screaming sessions (though not as often), refusing to be put down in her cot, curdled vomit etc but now she is throwing up milk immediately after feeds as well. I'm not sure this isn't just her overeating, so I've started giving just one side, but I am suspicious that it's more than that.

My HV mentioned there might be something else we can get that's gentler on the stomach than IG (why not give that to start with I wonder?). I've forgotten the name but it was 3 syllables starting with C. Anyone know?

wannabeglam Sat 30-Oct-10 14:27:19

bump

TheUnmentioned Sat 30-Oct-10 16:46:49

Thanks, I might mention it again to the HV as Im seeing her on Monday anyways. We have had 2 lots of projectile vomiting so far this weekend...

bethylou Sat 30-Oct-10 23:00:15

Can't believe I've only just found you all as have been replying to refluxy threads for months. I'm on our second refluxer (first one 'silent' and second one 'typical' and he's now 8 months (with sleep apnoea too).

Will keep popping back but for now:
Bollockstothis Reflux can definitely kick in after an initially quiet few weeks.

To an older question, I've been told that 'typical' reflux is 'better' hmm because the acid comes up once and goes out, whereas for 'silent refluxers' it goes up and down, thus burning twice sad.

Theunmentioned when I'm strong enough (and I'm sorry to say for those of you a bit behind me, I'm not quite there yet, but more because of the sleep apnoea and a paediatric consultant who still doesn't believe me that my baby holds his breath for 30 seconds at a time in his sleepsad), I fully intend to start some kind of reflux awareness raising campaign for medics, including health visitors, as the support we get as parents varies sooo much. I think between us on here we could make a real difference. I've even offered to go and talk at my GP's practice about the experience of being a parent to refluxers. In the meantime, let's keep an eye open on the actvie threads and bring the OPs to this thread. Well done Posie for doing what I'd intended to do and never quite found the strength and mental capacity!! smile

p.s. my terribly refluxy, full of meds, 8 month old finally slept through the night twice this week. Thank goodness! Does this mean I have to stop napping when the DS do now?!! smile

bethylou Sat 30-Oct-10 23:01:57

p.s. Nicky I replied to your original threads and was concerned when I heard no more so it's lovely to find you and hear that you are making progress (and,sadly, have joined the reflux expert club!)

TheUnmentioned Sat 30-Oct-10 23:12:44

Given that dd sleeps well (ish) , and is gaining weight and is happy enough is there really any point in going for a diagnosis? What would it achieve? Im nervous of meds for obvious reasons esp for constipation as she already only goes once every 2/3 days.

I do worry that the sickness is getting worse though....

TheUnmentioned Sat 30-Oct-10 23:13:47

Oh and can I repeat my question please blush

What do you all do when youre feeding in cafes / at people's houses? I am so nervous when out as for example this mroning she was sick and it went about 2 feet in distance, if that had been all over someone's house Id feel awful!!

gaelicsheep Sat 30-Oct-10 23:21:24

The Unmentioned - it's the projectile vomiting in particular that you should get checked out. There are other more serious conditions where that can be a symptom. Pretty rare, but they should be ruled out.

Bethylou - my DD used to hold her breath in her sleep. I'm not sure it was for 30 secs though, that must be terrifying! I mentioned it to the HV and she said it was normal for a newborn. I was a little hmm. Is it normal do you know? How long does it have to be to become sleep apnoea? Thankfully I think she's outgrown it, as far as I can tell.

gaelicsheep Sat 30-Oct-10 23:23:14

Sorry I posted too soon. TheUnmentioned - pyloric stenosis is one of the conditions your GP would want to rule out. See here. Not to frighten you though, it's rare.

BollocksToThis Sun 31-Oct-10 00:21:11

I'm sure this is our problem now, last 24hrs much worse, begged Gaviscon from pharmacist today but not touching it. On my chest crying her poor wee heart out now, been like this for hour, dreading next feed Going to see GP monday and beg for help. Much worse than DS ever was.

gaelicsheep Sun 31-Oct-10 00:27:03

Bollocks - do you mean she's not taking it or it isn't working? It will take a few days for the effects of the IG to kick in.

BollocksToThis Sun 31-Oct-10 00:47:49

getting it into her, just. But each feed is worse than the last, it.s just become really awful really quickly. I qualify that by pointing out that DS had "colic" until 6 months and cried 4pm til the early hours every night. This is shaping up to be worse.

gaelicsheep Sun 31-Oct-10 00:55:12

Oh poor you, and poor wee thing. sad Yes definitely see your GP - this sounds much worse than my DD. I'm probably stating the obvious, but are you sure she doesn't have a bug?

BollocksToThis Sun 31-Oct-10 09:30:40

Quite sure, yes, she's hungry, nappies normal, fontanelles ok etc. Just really shrieking and wrestling during feeds now and beside herself afterwards, and of course exhausted after hours of being unable to settle last night. Surely if Gaviscon's a feed thickener it should work pretty quickly ...? It has no antacid in it. Just got to ride out today then we go to GP. Poor wee mite

gaelicsheep Sun 31-Oct-10 09:52:12

I'm only going by what my HV said regarding the acid. She said it would take a few days for the inflammation and soreness from the acid reflux to settle down after the IG stops it coming up. That was my experience too, so you may still find it does make some difference. Having said that your DC sounds pretty bad so perhaps IG won't help and you'll need something more powerful. Hope you get help from your GP.

narmada Sun 31-Oct-10 12:44:28

oh guys, can i join here [weary emoticon]? ds is 12 days, sure he has (mostly) silent reflux like my DD did. I am heartbroken. I thought this baby (and us) was due sone good luck. I am going insane with tiredness/ trying to establish BF and missing my DD aged 2.5 who i have no time for.

i am sorry there are so many of us on here sad.

BollocksToThis Sun 31-Oct-10 12:56:24

narmada I've been following your other thread. Much sympathy, I too had a rotten time with my first and had high hopes for an easier run this time. It's soul-destroying. I really hope things improve for you soon.

narmada Sun 31-Oct-10 13:21:08

It really is. I try and be grateful (prompted by my wonderful DH) for all that we have - an essentially healthy boy and girl, roof over head etc. But it is hard to remain positive. I've skim-read your posts on here (sorry not to be more diligent - lack of time) and see you are in similar position - e.g., it's your second baby.

I am looking at my DD 2.5, thinking 'thank god it does eventually get better' - actually with ehr it did at about 6-7 months. But it does seem an awfully long way off and I am not sure where I'll find the fight from this time. Also so sad that I cannot just enjoy our lovely new baby. Do you feel the same?

narmada Sun 31-Oct-10 13:22:32

I hope things improve for you soon, too, by the way. I will think of you when we are at the GP tomorrow (goiong to try for an appointment and try not to be fobbed off this time).

BollocksToThis Sun 31-Oct-10 20:53:49

Thanks today's been a bit better. She's such a sleepy baby by nature that she's struggling to get enough, I think that's why she got so upset last night. Easier to keep her happy when DP's home to help. I'll let you know how we get on with the GP, and best of luck.

narmada Mon 01-Nov-10 10:56:29

i found some gaviscon in the cupboard left over from DD. So going to give it a try before going to GP. tried some in middle of night, whether coincidence or not we then had a better night.

how did you get on at GP BTT? totally agree re. having DP at home. I am planning not to be alone with my two DCs for quite some time to come...lots of nursery for DD etc, but don't know if it'll be possible.

BollocksToThis Mon 01-Nov-10 18:37:39

Good day, awful afternoon. HV phoned earlier, supportive at least. GP not until Wed. Currently lying feeding her in the dark, think it makes it worse as much as it helps but she wants to latch on for comfort and so hard to refuse when she's in pain and just exhausted

narmada Tue 02-Nov-10 16:41:00

how was your night btt? ours crap. sorry you had a rotten PM yesterday.

we saw v sympathetic GP today who immediately agreed it was reflux and said to try the gaviscon for 2 weeks and if no improvement we can move on to something else like ranitidine or omeprazole. nice to deal with one who doesn't make you feel like you're bonkers or a malingerer.

i hope you get a sympathetic hearing on weds.

i know what you mean about the feeding for comfort. i think it makes things worse too - have been using a dummy to settle him with varying degrees of success.

BollocksToThis Tue 02-Nov-10 21:18:14

Is it standard for these babies to be much worse in the evenings? I've put it down to overtiredness but she definitely seems more painful in the evenings than during the day.

Rotten night narmada, but thanks for asking! Great that your GP's helpful, sounds like they're switched on.

Fontsnob Wed 03-Nov-10 09:49:45

Hi, can i ask any of you who are using Zantac - does it make it harder for baby to poo? My 9 week old seems to be having difficulty with it ( adding to the rest of the pain ) and I was wondering if it was indeed the medication, she came off of gaviscon for the same reason. Also does anyone manage a regular feeding timetable (for want of a better word) I seem to have a breast out constantly when I'm at home, especially in the evening.

gaelicsheep Wed 03-Nov-10 22:19:23

Timetable? What's that?!

Can I also ask about medication? I've remembered the name of the product mentioned to me by the community nurse - Carobel. Anyone used it? Is it really gentler on the stomach (ie doesn't bung them up?)

bethylou Wed 03-Nov-10 22:26:06

Fontsnob whenever we change a reflux medication, my DS2 takes time for his digestive system to adjust. I guess the fact is that it is affecting their digestive systems so may affect bits it's not supposed to affect too. I find DS2 settles down after a few days. The GP said he could prescribe Lactulose (a stool softener) reluctantly if required, but I personally add a couple of drops of orange juice to his water (now he is 8 months) and this helps. This was advised by a paediatric nurse.

My two have been happy to feed three hourly, after I generally stopped feeding on demand at about 3 weeks, despite the reflux, but I always tried a dummy first before trying a feed if they didn't settle with the dummy. Obviously, everyone has their own opinion on using a dummy, but for me a) it helps the reflux according to some of the websites and b) it meant I could get into a routine and never needed to feed for comfort. Neither fed in the night from 9 weeks onwards. However, I know that a lot of babies cluster feed - I was just lucky that mine didn't. I used the Baby Whisperer book which works on an eat, activity, sleep (and 'you' time) (thus E.A.S.Y) idea. Timing is flexible, but that's what she recommends over an approximately 3 hour period. Hope this helps.

Fontsnob Wed 03-Nov-10 22:58:51

I know, timetable was a bad choice of words (I blame being a teacher - mind you, you'd think I'd thrive on routine and be living a Gina Ford dream - ha bloody ha). Thanks for the suggestions, dd gags on a dummy but I just read somewhere on a thread that the rounder ones may be easier to take than the orthadontic ones so I may try that as I'm never sure if it's hunger or comfort in the evening and by her 11pm bedtime my nipples have had enough. Oh how I laugh at my naive pre baby self who was definite that baby would be asleep by 7 every evening! Btw it's thanks to this thread that I was confident enough to go to the doctors a few weeks ago as dd was having pretty much every symptom described by you all. Thank you.

BollocksToThis Thu 04-Nov-10 07:47:08

Well, the GP thinks it's more likely to be nasal congestion hmm so we've got more saline to flush her nose with and we've to go back in a week or two if no better at which point he'll consider reflux. I am sceptical (thought reflux could cause nasal congestion) but she had a really good day yesterday, bit of howling in the afternoon but then she slept through the evening. I'll come back to you on this

Ladybiskybat Thu 04-Nov-10 15:40:28

Ladies, I find such comfort in reading your stories, although I feel the tiredness and frustration felt by you all. However hard is it to get someone to listen to you about your baby being in pain? My Ds now 19 weeks projectile vomited from birth until about 13 weeks but from then on suffers with silent reflux and its awful watching him in so much pain! HV advised seeing gp again who prescribed Lansoprazole. (Anyone else on this?) Didnt make a difference and noticed Ds became very hoarse at weekend and even started grunting when breathing when lying down. Went to out of hours where woman gp made me bf him in front of her and checked me winding him in case it was wrong (also got 2+ yr old bf for 18m!). Felt v deflated went to my gp on mon who asked what symptoms made me think reflux even though he's already on meds for it and then suggested I should have some antidepressants I AM JUST TIRED! Have asked HV to refer to paed cos I want 2nd opin. Since Mon tho, gp has made me question everything...am I mad? In ref to the proj vom when going out...i had several spares of everything for me and Ds. Also hundreds of muslins and took an old bed sheet when going to friends. Found myself being a bit of a recluse tho! You can never explain how far it goes til people see first hand...really feel for you big hugs :-) sorry for jumping in but very fed up of know one understanding and thinking im being neurotic x

narmada Thu 04-Nov-10 16:55:04

ladybiskybat poor you. sorry you are getting next to no medical support. is it any wonder you seem depressed??? why are docs so often prone to presuming the problem originates in the mother??! anyone would feel down being as tired as a reflux baby makes you.

a question from me: to what extent do you LOs choke on feeds? we are currently trialling gaviacon which is def not keeping the sick down (DS is mostly silent). he said try it for 2 weeks but the choking post- and during feeding is freaking me out. should we press for referral sooner?

narmada Thu 04-Nov-10 16:57:12

bollocks, what a load of bollox about nasal congestion, i am inclined to think. but then i am not a doctor.

we had a good day yest too and thought all was solved. but oh, the nights..... how was your day today??

Ladybiskybat Thu 04-Nov-10 18:58:28

Narmada thanks for the sympathy. I see what you guys say on here I look at my little man and know it is reflux but very reluctant to tell gp about using these support sites. He's usually very good my other LO suffers with wheezing and always very helpful. My hv says you go 4 times to gp with baby they think you have PND. Boo hiss. My DS often chokes during a feed and quite often afterwards too. I hear it come up then he starts to cough, I agree its terrifying and I find myself checking on him throughout the night and defo not into his own room yet. Does anyone have a smiley baby? My DS is a model lovely. Smiles and is pleasant all of the time apart from feeding (altho not all of the time) and for about 2 hours after when he grimaces/cries/arches/becomes rigid. He's not fretful or irritable and aside from feeding/after is fabulous little one...although I have now bought a sling because I have to carry him upright all of the time, will not sit at all. Anyone else have LO like this as its the only thing putting doubt in my mind gp implies reflux babies always irritable? I hope you all get some sleep tonight it xx

Fontsnob Thu 04-Nov-10 20:38:39

Lady, my dd is generally a smiley happy one, she has every symptom listed here on this thread though. I know what you mean about feeling doubt because they aren't screaming all the time. The Zantac has really helped my dd although it's horrible for her to take as the taste is so strong. She still has bad days but not nearly as often now and I'm hopefull that she will grow out of it. I hope you get some help too. Don't be afraid to stand up for yourself to the GP, after all you are the person with your baby all day and night to see what's happening.

BollocksToThis Thu 04-Nov-10 21:21:33

Ah well, bad day here - she cried herself crazy 3 times, just desperate for sleep but can't settle comfortably. She's alway groaning, writhing and wheezing in her sleep, but more often can't fall asleep to start with. Bags under her eyes too . Think we'll be going back to the doctor with a list of symptoms and DP.

To those whose babies are happy - DD is only 6 weeks but is a content wee soul in the morning. She's never whiny or grumbly, just sore.

Hope you've all had a good day.

fiveisanawfullybignumber Thu 04-Nov-10 21:37:13

Feeling the pain of all of you. DD is 6m old today and has been fairly settled for about 6 weeks now but it's been v tough!
For those of you that are BF and have comfort feeders like mine, don't switch sides. Keep feeding from the same side for 2-2.5 hours at a time. Too much foremilk will make them more unsettled.
Also try cutting out dairy/soy and wheat/gluten from your diet. Try dairy/soy first then cut out other if you think it's still needed. Dairy/soy causes my DD to projectile. (Had a few coleiac digestives yesterday, than unfortunately had soy in them, DD projectiled next to DD1's (16yrs old) prospective 6th form headteachers foot at an open eve last night.blush)
Wheat/gluten gives her mega painfully tummy cramps, spasms and makes her very unsettled and unable to relax and go to sleep even in my arms, we had 4m of hell!sad
Very un MN type hugs to you all.

bethylou Thu 04-Nov-10 21:53:57

We have a happy chucker here, apart from during feeding when the meds are wrong. We're on lansaprzole this week but haven't formed an opinion yet, other than DS2 is properly constipated.

To those of you struggling to get recognition at the GP, please do not wait weeks/question yourselves. I have learnt this year that the amount GPs/HVs know about this can be extraordinarily limited. You have the right to request a second opinion and paediatric referral and they have to have a good reason to say no! I really am going to start a campaign in the coming months to ensure a certain level of common understanding amongst these folk. It's crazy how varied a response we all get and is just not right. Rant over smile (p.s. I might bottle up my GP and sell little bottles of him to you lot as he's fab).

bethylou Thu 04-Nov-10 21:56:19

p.s. Can I suggest taking a partner or family member with you for back up? My GP knows we mean business when DH turns up too. I think it's harder for a GP to disagree with the father, who (male?) GPs assume are more level-headed that their emotional wives/partners!! This may be extremely harsh, but at least your DPs can back you up in the severity of the symptoms etc..

Ladybiskybat Thu 04-Nov-10 23:23:56

Fonts...my baby was on zantac but it made him worse and didnt stop the sick so we came off it. Five...my gp reckons my diet wont affect Ds...is that rubbish then? I bf exclusively. Think he must comfort eat as was on 50th when born went up to over 91st and now tailing off just under 75th. That's why they're not bothered...He's putting some weight on after all....*Bethylou*...think you're right bout DH being there. Will try that on next visit. And I defo agree about the lack of understanding it's so frustating. Thank goodness my hv has referred him, just hope appt not weeks away. Ps we been on Lansoprazole now for ten days and not noticing much diff? Gp said to try domperidone again...but thought that stopped the sickness and he's not being sick anymore? Btw not affected his nappies too much although instead of being smooth it seems a bit more curdled? Very vinegary and altho never sits in nappy his bum is always very sore looking?

fiveisanawfullybignumber Fri 05-Nov-10 09:05:24

Lady, your GP is just as uninformed as most!hmm They really frustrate me with their lack of knowledge on this subject, and the whole they are putting weight on so it's ok thing makes me sooo mad.
I've found that what i eat has a massive impact on how DD is pain and sickness wise, and dairy is a well known irritant for reflux babies. Give it a try, it may not help but it's worth it if it does. Try cutting out dairy then soy, for margarine try Vitalite or Pure sunflower spread. I can give you loads of other help if you need it.
Try wheat/gluten last as that's quite tricky when you're already dairy free!
My DD is a bit unusual in that sh has reflux and multiple food intollerances, but it's not unheard of so always worth a try. It was another reflux mum (her DD is now 5 and has outgrown all her problemsgrin) in our village who advised me to try.
Zantac will try to neutralise the acid, domperidone tries to reduce the amount of sickness by speeding up digestive transit.
Omeprazole in the correct dosage is the best, it stops their little bodies from producing acid in the first place, no acid no reflux pain, but will take a couple of weeks to get to full effectiveness and let throat heal.
I needed to be very assertive when it came to the docs, tell them your DC is thriving because they're comfort feeding to ease the pain which is actually counterproductive. It's their job to help ease your baby's pain, they CAN prescribe Omeprazole but may not be too sure about it, and a maximum dose per DC's weight (as my DD needed) may need a referal to a paed consultant.)
Good luck, with the correct treatment and or diet choices it does get easier. DD spent the first 4m of her life screaming in pain, she's a joy to be with now, still lots of sick, but a happy girl.grin

Fontsnob Fri 05-Nov-10 10:09:11

I find it difficult to know if the meds are working as they should as dd is my first so I have no clue what is 'normal' she doesn't seem to have as many grumpy pain days. But is still foaming, hiccuping, sicking and stretching up and back after some feeds and last night she was choking on something in her sleep (that's the bit that scares me). Does this mean that even though she is happier I should go speak to the GP again or is this as good as it gets?

fiveisanawfullybignumber Fri 05-Nov-10 10:41:16

I've accepted that a reflux baby is always going to be sick till their body matures naturally, the main thing for me is that DD is pain free. She still has some fighty feeds and does the choking in her sleep thing when she's got the snuffles or excess saliva, probably from teething. Even though she's now mostly pain free I still put her on her 45degree sleep wedge to help alleviate the physical symptoms. Try getting one of the AR infant sleep wedges like mine, it may help with those symptoms.

narmada Fri 05-Nov-10 14:59:15

fonts my DS does the choking thing too, even when he is upright. My DD1 did it too, she stopped i think when she was about 20 weeks. She was also a silent refluxer. no advice but just wanted to share.

On a different subject, has anyone had any success with domperidone? we got prescribed it by the GP this a.m. as gaviscon not working. i am really nervous about giving DS who is only 2 1/2 weeks old 'proper' meds. on the other hand he is unhappy 90 % of the time he is awake and his sleep is very disturbed, along with all the other reflux symptoms of course. It is killing me...

Ladybiskybat Fri 05-Nov-10 21:02:00

Narmada my DS was prescribed IG from 6 days and was hospitalised at 11 days due to sickness. We were put on domperidone and ranitidine when he was 14days. We did it strictly but found it didnt affect his proj vom at all. We thought that it also caused him to have really bad tummy griping so as it made no difference to the sick levels we stopped it as he wasn't in any pain then. It depends on how quickly your LO gains weight but the dose has to be increased as weight increases. I know from the research I did at the time it's not licensed for use in babies in the US. Gp just represcribed it for us but holding off at the min. Hate the thought of him being on things for no point. It's a catch 22 either way tho if he's unhappy then maybe worth trying to see if it works for you. Does that help any sorry it's not a success story?x

Fontsnob Sat 06-Nov-10 07:28:52

Morning, does anyone else have trouble with giving ebm in a bottle? Dd gags on bottles teats (and dummies) wondering if it is related or just a particular quirk of dd.

Ladybiskybat Sat 06-Nov-10 09:15:00

Fonts mine does really badly. Going to watch join bishop on fri and so nervous for my mum doing the feed. Having practice run first and maybe try a training beaker and see if that works x

Fontsnob Sat 06-Nov-10 10:38:44

Bugger it, I'm supposed to be going to a baby free wedding in three weeks and I have a feeling I won't be able to go as it won't be very fair on my mum if dd isn't able to feed.

Fontsnob Sat 06-Nov-10 10:55:39

Sorry Lady, I just realised that I worded that badly and hope you don't now feel worse about leaving your lo for the evening! I would definitely try if it was the evening, I just don't think I should do the wedding as it is the whole day and evening.

Ladybiskybat Sat 06-Nov-10 12:14:19

No, I know what you mean completely. We went to one last week and it was so stressful with both LOs. I cant remember how old your LO is but think those little cups have a sucking bit inside that can work or maybe try cup feeding from bottle lid? Will try the cup on mine as a practice this week and see how we do. Will let you know

fiveisanawfullybignumber Sat 06-Nov-10 14:36:46

Try the tomme tippee evolva cup with soft spout. like a cross between bottle and cup, it needs a bit of effort to suck, my DD is better with this as she doesn't gulp and choke (as much) when having the occasional bottle.

narmada Sat 06-Nov-10 18:02:31

Thanks ladybiskybat for sharing your experience with domperidone and ranitidine. We went to a and e today as DS wasn't sleeping for more than 45 minutes at a time and feeding constantly (he is a gorger I think) and I was feeling so, so desparate. Of course he behaved impeccably there but nevertheless, the paed we saw prescribed ranitidine to give in addition to domperidone, we pick the ranitidine up from the hosp pharmacy tomorrow as it was closed today.

I am beyond tired, just living on the edge. To add to our woes, I think DS is reverse cycling - e.g., sleeping more in day than in night (obv neither very well) and we have a toddler: even with a fantastic DP who is willing to take her out and entertain her, it is hard to rest in the day when they are in and out of the house.

I am this close to giving up breastfeeding and putting him on the bottle, which would break my heart but would at least mean DP could do a split night shift with me.

This is so hard. I feel like I am in a living nightmare. Sorry if that sounds overdramatic. Some of the stories on here are truly a lot worse than ours, I do recognise that.

Ladybiskybat Sat 06-Nov-10 20:21:08

narmada sending big hugs. I completely empathise with you as it sounds very similar to us. It's so tiring in those first weeks when you dont get to rest and nevermind having a toddler as well. Could it be that your LO is having a growth spurt too and cluster feeding? My DS comfort fed lots and I remember being told by a registrar that I was over feeding him as baby's have small tummy and that's why he proj vom...although he would always feed after he threw up and keep that down?! Im lucky that my DS2 sleeps fairly well at night but my DS2 is an awful sleeper waking lots during the night and between them im shattered the next day. Is there any chance you could bf and your DP could take over til baby sleeps and you get some rest? It's easier said than done tho- I know bf is such a commitment and understand why you're at that point. Do you have any one else who could help out? Maybe you feed baby and they could have LOs whilst you rest? Have you tried baby in a swing? Worked wonders for us. You put the cot on raised bits? Hope you get some sleep x five thanks for advice re cup will get one tom and see how we do

narmada Sun 07-Nov-10 08:55:10

lady thanks for your post, lots of sensible ideas. will have a think about them

gotta get up and pace to get DS off to sleep...

Fontsnob Sun 07-Nov-10 20:08:20

Ok, please no more sick today. Thanks.

gaelicsheep Sun 07-Nov-10 20:58:37

narmada - big hugs. Sounds like you're having a nightmare of it. I just wanted to say that of course you want to continue b/f and I really hope you do. But if you do think you need to give up, think about just giving a night time bottle. Yes it will impact on your supply, but it may not be irreversible. I gave night time bottles up to 12 weeks then cut them out and returned to EBF. Just something that might be worth a try before taking a decision to give up completely. Hope you don't need to though. smile

We started DD back on IG yesterday. Very little sick today. Fingers crossed.

Ladybiskybat Sun 07-Nov-10 21:10:28

Is there something in the milk today? Awful day screaming lots and nothing was right, eyes full of tears. Also started with sick again. Lovely. Hope you're better than us

narmada Mon 08-Nov-10 11:39:43

gaelic glad the IG is having an impact. Long may it continue, hurra. It is so fantastic when something seems to make a difference, and I dunno about you but those good days are the motivation to keep going...

lady sorry about your day, it sounds very tough indeed. It is so hard to see them cry real tears. Poor wee things. I am sure it is something deeply biological too but as soon as my babies start crying I get uber-stressed, which really doesn't help.

We are on day 2 of the ranitidine/ domperidone regime. So far things seem a little better and I got more sleep last night so everything seems more bearable. Still BF, it is not easy but I absolutely hated all the sterilising bottles with DD so I am pressing on.

I am feeling cautiously positive but acutely aware having had one refluxer already that things can go south again rather sharply. Me? Pessimistic??

ONe question - do any of your LOs wheeze or rattle? DS is doing this on and off. I don't know whether it's just par for the course or whether I should be more worried than I am about it.

MHope everyone's LOs behave impeccably today and tonight.

narmada Mon 08-Nov-10 11:41:28

Oh and gaelic thanks for the tip about the evening bottle. Will definitely keep it as a reseve option. Oh yes!

Ladybiskybat Mon 08-Nov-10 19:56:46

What a couple of days. DS ended up at a and e on sunday eve a he was grunting as his was breathing like as if he was straining for a poo and then he had these strange tic-like things, several of them. Nhs direct said to take him up waited 3 hours to be seen after triage and ended up on paed ward. They dont know what these twitches were but think could be side effect of Lansoprazole. Have been re started on really low dose of both domperidone and ranitidine and have to go back for bloods tom...so on top of DS being extremely upset with reflux at the min now has to endure more prodding as they can never find veins. Was so scary with the twitches. Anyone else ever had anything like this? And there is now sick, lots of sick thought it had vanished so feeling a bit rubbish about it all.

bethylou Mon 08-Nov-10 21:11:02

Sorry to hear that several mummies and babies are having a hard time on here at the mo.

Lady the one thing I have learnt above all else is to enjoy the good days, but not to assume that it is a forever solution. I'm sorry if this is too pessimisitc for those of you who have had a good run, but I have really struggled in the past with the disappointment when we go back downhill again. As I say, I've learnt to accept the good days as a good phase and really enjoy them while they are happening. In fairness, at 8 months, DS2 is improving, but teething really sets us back each time, as do colds.

Fontsnob Tue 09-Nov-10 09:49:49

lady sorry that you had such a bad time. Have you done any research into Sandifers? I don't know if it is the kind of twitches you have been seeing in your lo but it may be worth looking into. YouTube has examples from mums who needed to film their lo's to show the doctor. I think our Zantac prescription is no longer working so back to the GP.

narmada Tue 09-Nov-10 16:44:02

lady that sounds awful. and poor you having a 3 hour wait to be seen. I hope things improve for you soon.

My DS sometimes twitches when (i think) he is chronically tired. it's usually his leg that does it. I suppose it's like that 'falling' senstion you get when you are in bed.

Ladybiskybat Tue 09-Nov-10 18:58:14

Hi ladies thanks for the messages. Fonts I had the courage to ask if it could be Sandifer's as I looked at youtube and have noticed him doing very similar things to those but never thought it was anything but my little boy and his uniqueness! Doc looked strangely and then came back later saying it could be so obviously went off to google herself. (She was lovely tho). Have got to push to be seen in clinic, but no sooner as we were on the way home my hv rang to say she'd had call from clinic saying we'd been in so hope it's sooner rather than later. The meds we're on are so low dosage not sure they'll help, surely better than nothing though?
narmada thanks for sharing bout DS. My LO starts with his head jerking and sometimes does his arms and legs but not all of the time. Have noticed lots of episodes today. Got jabs tomorrow let's hope it's a good day:-S

Fontsnob Tue 09-Nov-10 21:37:50

Lady can you let us know if you get any advice or info from the clinic (fingers crossed for speedy appointment) about Sandifer's. My dd does the stretching her head back a lot and the arm thing on her bad days, it looks like both arms have suddenly been yanked back like a puppet on a string I have only done my own research on it and get the impression that it is a bi-product of the reflux, causes no harm and stops when the reflux symptoms are under control. I would love to know what a professional says about it. I haven't spoken to GP myself as I sometimes feel like I'm doing too much self diagnosis and finding things that are wrong iykwim.
On a massive good note I finally got dd to take a bottle of ebm! Hooray! Can thoroughly recommend Breastflow bottles, heated so milk is warm and so is the teat. As soon as the teat was warmed she started to suck. I think it helps that the teats are shorter than others and seem softer too.

narmada Wed 10-Nov-10 15:17:22

gad you got clinic appt, lady - that's good. can't type much now as got to venture out but hope all faring ok today.

Ladybiskybat Fri 12-Nov-10 04:12:23

fonts I will defo share any info I get from clinic but so far all docs and hv same as other people say, have no idea about it. He's started turning away and kicking legs out several times during feeds now too. He seems in so much pain not hopeful about meds. What type of bottle are breastflow. We had a trial run of several tyres of cups but none were successful. Not looking forward to my night out tonight. DS1 being a right monkey too deciding he doesn't want to go to bed anymore. Was 10.10 before we got him to sleep tonight.

Fontsnob Fri 12-Nov-10 09:47:59

http://www.breastflow.co.uk/ I got some from amazon and I made sure the teat was warm as well as the milk, she took it right away then. Fingers crossed for you. My GP suggested cranio-sacral therapy (I think that's how it's spelt) so I am going to look into that as the Zantac isn't working so well now and his other suggestion was to give the gaviscon as well. But that makes her poo really thick and uncomfortable to pass.

Fontsnob Fri 12-Nov-10 09:49:18

Oh and I really really hope you get to enjoy your night out!

Ladybiskybat Fri 12-Nov-10 23:04:10

Fonts thanks for the advice got my mum on it on her shopping trip today. She spoke with my aunty who's a midwife who recommended nuby silicone something. I very nearly didnt go out but did and sat by my phone for most of the first part of the night. But...he had milk from the bottle both boys into bed and we had a fab time watching bish. If anyone needs cheering up he's so funny! Hope you all had a good day too x

narmada Sat 13-Nov-10 18:07:32

a night out! glad it was good, lady.

how on earth do people cope with a reflux baby and an understandably attention-seeking toddler?? words of wisdom please. it is totally beyond me.

i looked after both kids for 3 hours yesterday and nearly had a nervous breakdown. baby won't go in swing or bouncy chair- cries, sometimes will stop crying in sling but his head flops about (he will only go upright) meanwhile DD making incessant requests for me to do things that are physically impossible with a baby over my shoulder like face painting, etc, and instructing me to put the baby down in his cot! I had even planned activities for her to do, got poster paints ready etc, to try and head such situations off, but she didn't want to do what I'd suggested of course. She is 2.5. And as for when I'm trying to nurse my son....! I know her behaviour is normal but it is so hard to cope with her on top of a perpetually fussing baby who is either crying, slung over a shoulder, on the breast or fighting the breast. And all on about 3 hours' sleep a night.

by the time my DP got home the kids were both screaming and i had to run into the bathroom for a desparate sob. soon i am going to be doing 3 full days with both of them and to be honest I would rather go through labour once or twice a week than look after both kids.

I am on the verge of asking DP to take caring leave from work for a month or so. We are lucky in that we have very supportive employers and for that I am grateful but it is unpaid and we might struggle a bit

Someone stop me cracking up!

Fontsnob Sun 14-Nov-10 10:22:00

Narmada really sorry that you are having a hard time at the moment. Have you got a decent health visitor? Just wondering because mine have been fab and have just sat and listened to me moan ( and I only have one baby - hats off to you coping with two! ) they also run a wellbeing group at our sure start center for mums who need extra looking after, perhaps there might be something going on like that near to you? My other suggestion is a sling. I borrowed a friends Kari me sling, my dd loves it, she is upright, close to me and you can do all sorts including the cooking ( mind you I never do as I'm paranoid I'll rest her on the hob by mistake! I know that's my avid imagination going mad ) I have also managed to feed her in it whilst on a walk! Did feel a little odd but she didn't seem to mind.

Lady really happy for you and your successful night out. Yay!

Ladybiskybat Sun 14-Nov-10 10:22:34

Narmada, I completely understand, completely. My DS1 is 2.5 and very bright but very demanding. He knows exactly what he's doing when he asks similar requests from me. He even tells me to put baby in cot or give him to daddy. When I have both of them I spend most of the day feeling guilty that im not doing enough with either. It is so, so hard. I even do the planning thing likes painting or cutting and sticking but if baby is not good then it all goes out of the window. I find myself snatching 5 mins with toddler when baby has a cat nap. I am lucky that baby will be content in cot with mobile for 20mins or so before becoming upset but otherwise its a tough day. What type of sling do you have? I had a babasling but found it useless and just bought a traditional upright one from mothercare and now I dont know what id do without it. I only ask cos it has a bit for younger babies to keep head in and supported? You mustn't feel bad about crying. Sometimes it's the best thing to do. I cracked up on wed sat on the kitchen floor rocking backwards and forwards. It might seem like you are the only person who feels like this but you're not. Although I agree unless you've had a reflux baby you have no idea! Sending big hugs to you. Il say to you what my gp said to me... You're doing a great job just remember you're working with difficult materials

Fontsnob Sun 14-Nov-10 15:45:32

Sorry just re-read that you have a sling Narmada so I apologise for useless advice!

cardamomginger Sun 14-Nov-10 17:29:01

Hi Everyone,
Have been following the thread for a while, but have had not much time or energy to post! Firstly, so sorry to everyone who is having a rough time of it sad. My 7 week old was diagnosed with reflux and cow's milk protein intolerance when she was 3 weeks and was started on ranitidine and Nutramigen. After an initial improvement, she started spiralling back down and her meds were changed to lansoprazole and domperidone (still with the Nutramigen). Again, after an initial improvement she seems to be getting worse again, and now she is regurgitating constantly when she wasn;t before. I guess I am wondering whether other people have found this - an initial improvement after starting/changing meds that doesn't hold out? I was wondering whether the domperidone might be causing the regurgitations? This is not based on any research, just a hunch because sometimes it seems that the milk just stays in her oesophagus before coming back out (although she rugurgitates an hour after feeding too - so that much come up fr0m her stomach). As the domperidone is supposed to help the sphincter between the stomach and oesophagus tighten with the aim of preventing stomach contents coming up, could it also prevent the milk from going down properly?

narmada Sun 14-Nov-10 18:50:09

Fonts, don't be daft - it's good advice. I have been persisting with the sling today to better effect, trying different positions. Actually today has been a good one. DS has slept and fed quite well. And DP has been here, which has been fab. Even my DD has been quite content and I have had a bit more time for her. A good day - phew!

Lady, thanks for the really supportive post. It sounds like your son and my DD are similar. Difficult materials - that's classic! I will bear that in mind. Sorry you had a time of it on Wednesday. How was the weekend for you?

cardamomginger sorry to hear about your DD and I can understand about the lack of time and energy. I can only type this because DS is asleep (!) and DD is being occupied by Postman Pat.

I hope you find the right combi of meds soon. I can't answer your question about the domperidone directly, but I do know that my son is on it too and he has gone from being a silent refluxer to a very unsilent one over the last 4 or 5 days. So it appears not to be keeping the sphincter closed as claimed but maybe I am missing something.

With regard to the medications apparently stopping working after a while, has she been reweighed and the dosage recalculated? I gather that the dosage needs to be adjusted quite regularly. I am not sure how regularly it needs to be reviewed, though - no-one really told us that. I have given it about 2 weeks and we have nearly run out anyway so I have to go back this week.

narmada Sun 14-Nov-10 18:50:49

Sorry Lady, I didn't mean that your eldest was difficult materials (or my DD for that matter!) realised it could read rather insultingly!

cardamomginger Sun 14-Nov-10 20:31:01

thanks narmada. hope things get better for you too. the deterioration occurs literally within a few days - we've only been on the new drugs since 2/11 and after an initial improvement over a few days she started getting worse again. We have an appointment at GOSH on Tuesday. We shall see...

Fontsnob Sun 14-Nov-10 20:33:45

On a lighter note it seems dd is calmed by Take That and I just found a buzzy bee baby bracelet thingy velcroed to my bra. Good times.

cardamomginger Sun 14-Nov-10 20:57:48

DD likes Guns 'n' Roses and ZZ Top... confused

Ladybiskybat Mon 15-Nov-10 02:33:50

cardamomginger im not too sure about the anatomy of it all but I have definitely had several meds that have worked for a while and then it's all gone wrong. My DS put on weight very quickly at that age about a pound a week and you definitely need to have the dose adjusted accordingly. We were on Lansoprazole until last week when they thought it wasn't suiting my LO so we're now back on dom and ranitidine not that they're doing anything though. I always find initially there's a change then downwards we go. Hope gosh appt goes well, least you've got some good experts to ask. Narmada dont worry about it my eldest is definitely difficult materials at the min-no offence taken We've had a tough weekend but DH has been home which helps and he's back to work tom. Ive noticed lots of these twitching things now. He'll be feeding away nicely and then pull off, turn his head to opposite side and scrunch his body like he's doing a sit up and then twitches his legs. It seems to bother him tho cos he is usually mid feed and feeding well. Have got a friend of mine asking her gp friend about Sandifer's tom so will post anything of interest. Really hope clinic appt comes thru this week or il have to go back to gp about meds...they say to give 2 weeks to work cardamomginger so I always wait that long before hassling him again so I dont get the lecture. fonts am loving the take that and velcroed bee image :-D

narmada Mon 15-Nov-10 13:48:59

Lady I hope you get your appointment and get to the bottom of the twitching thing. I am hoping it's just a reflux thing - sounds like it could well be. I guess being in pain can make a body move in all kinds of strange ways.

The 2 week lecture - ha ha, I know what you mean. There was no way I was ploughing on with gaviscon for 2 weeks though. It clearly was doing nothing.

On our part, had a lactation consultant around this morning and she has spotted DS has a bloody posterior tongue tie and a narrow, high, arched palate which is making him less efficient at feeding than he would otherwise be. And clicky, and windy too as he swallows gallons of air. Why is nothing straightforward??? She suggests getting it clipped (the tongue tie) but I am a bit confused - dunno what to do.

Ladybiskybat Mon 15-Nov-10 14:40:39

Narmada how old is LO sorry im rubbish with memory at the min and I access this on my phone so cant check again. Anyway I think upto a certain age the babies have no feeling in that bit of their tongue and its best to do before 12(?) weeks. I had a friend who's DS had it done not long ago. My DH should have had it done when he was baby but it wasn't picked up. It doesn't affect him too much but cant stick his tongue out properly cos its like its stuck down inside. I know what you mean though. Ive been up since 4am and not much sleep til then. My eldest is being soooo naughty. Refusing to go to bed and screaming. He's smacked me in the face a couple of times and emptied a carton of fresh orange onto the floor. DH flipped out last night. Bad times indeed

narmada Mon 15-Nov-10 14:57:13

oh lady, what tine of it you're having. I so feel for you. I don't know what to say... just sending big hugs. do you have any help with eldest or can you get anyone round??

narmada Mon 15-Nov-10 14:58:13

My DS is 4 weeks, only reason i'm hesitating is it's a posterior tie, think minimally more invasive....

Ladybiskybat Mon 15-Nov-10 15:40:19

Thanks for msg. My mum came round this morning to have baby so I can spend time with toddler. I know he gets so much time from me but still beat myself up about it. It's awful thinking of them having to have something done so small I was the same when they thought DS2 had pyloric stenosis...but if he feeds better? Maybe worth it ?

narmada Mon 15-Nov-10 15:50:28

Glad you have some support at least some of the time. It's so hard. But you're doing it. Well done! I think you'll deserve a fortnight in caribbean when things settle down....

Yes, I think probably worth getting the TT done.

Got to go now, dared to put DS down in cot so I could go to the loo, now he has woke himself up hiccuping and writhing. Poor sausage.

Got GP tomorrow. Going to ask for a referral to paed. Think it's time to wheel the big guns out...

cardamomginger Tue 16-Nov-10 15:53:20

Thought I would share what our consultant at GOSH said this morning, in case it helps anyone. Briefly, DD is 7 weeks old and has had symptoms of reflux and diarhoeah (sp?) since 2 weeks old and eczema since 3 weeks old. Since then she has been on Nutramigen and ranitidine, which was then switched to domperidone and lansoprazole. Each time we've started something she has shown an initial improvement followed by a decline. Most recently she has started regurgitating, looking bloated and has been constipated (although the poos themselves are quite loose). The consultant, who had not seen her before, said that it was not reflux!! The combination of her gastric symptoms, her eczema and the pattern of initial improvement followed by decline leads him to conclude that she is experiencing an allergic reaction with associated inflammation. Her gastric symptoms are caused by the nerves in her stomach misinterpreting her stomach stretching as pain, and the regurgitating is because her stomach goes rigid, won't expand and so the milk comes back up. This is all part of the inflammatory response. Her eczema is part of the same allergic reaction. He's told us to stop the domperidone because it's doing nothing for her, stay on the lansoprazole - by reducing stomach acid production it is reducing the volume her stomach has to cope with, although reduction in stomach acid is not what she needs perse iyswim, and to change to Neocate milk. He said the Neocate is better from an allergen point of view (has never been near even a whiff of cow's milk) and the stuff itself promotes healing of the gut. Review in 4-5 weeks, although even once the inflammation has gone it can take 8 weeks for the gut nerves to settle.
Thought I should share in case anyone finds this useful.
Hope everyone is having a better day.

Ladybiskybat Tue 16-Nov-10 18:25:02

Thanks for sharing cardamomginger at last an explanation for you and now they can treat it properly. I remember reading somewhere in my endless research episodes that a lot of babies with allergies are misdiagnosed as reflux babies. I dont think we have that here mind, no skin issues and definitely no constipation! narmada how did gp visit go? Hope it was successful. We're still plodding here. DS1 was good last night, only 2 trips into him combined with only 2 feeds for DS2 = semi decent sleep for me although DS2 has got horrid sneezey snuffly cold, lovely. Hope you are all well and smiling...a bit!

bethylou Tue 16-Nov-10 21:01:49

Haven't posted on here for a couple of weeks but heard today from my HV about a lady who she is supporting. The HV picked up that the baby had reflux and was terribly unsettled, but as a HV is not allowed to diagnose, she suggested review by GP. GP said 3 week olds don't get reflux and he wouldn't prescribe meds as the baby was not losing weight. The baby then suffered a non-accidental injury and there is a child protection case occurring as a direct result.

Hearing this made me so sad. I'm sure so many of us can totally understand how someone can reach that point with a refluxy baby (though I'm obviously not saying it's okay to act on it) and it makes me mad that GPs have such a variable understanding of the condition and the effect it has on families.

Ladybiskybat Tue 16-Nov-10 21:32:51

Bethylou that's one of the saddest things Ive heard in a long time. As someone who has had a gp suggest I need antidepressants I know how frustrating it can be when they look at you like you're imagining it. What an awful awful situation to be placed in. I hope they will both be ok.

narmada Tue 16-Nov-10 21:40:47

Gosh how utterly awful Bethylou. I think there needs to be a big awareness-raising campaign about reflux among GPs. I hope the child and family are OK - the stress reflux can place on families is enormous, I agree.

narmada Tue 16-Nov-10 21:41:16

lady hurray for your decentish sleep, that is really good going. Long may it continue. You deserve it.

We now have omeprazole from the GP, starting tomorrow. Hoping it works. He has been off the domperidone and ranitidine today so god knows what kind of night lies ahead.

bethylou Tue 16-Nov-10 21:46:22

p.s. I'm not ignoring your individual plights, just a bit worn out at the mo and find it hard to remember how things were when DS1 and 2 were tiny. I hope that's reassuring that I have forgotten a lot about the bad days!

bethylou Tue 16-Nov-10 21:47:31

p.p.s I am going to start a thread in chat to see if anyone can tell me how best to go about the kind of awareness raising that needs to happen re reflux amongst the medical profession. I don't really know where to start but this has galvanised me.

Fontsnob Wed 17-Nov-10 09:24:34

How horribly sad. Anything I can do to help with campaign, count me in. I think I'm pretty lucky compared to most dd reflux doesn't seem as bad. Bit of a scare last night though as she had a very small amount of blood in her sick. GP said probably from retching which was a relief but made me feel a bit sad. Hope you all have a good day today.

strawberrycake Wed 17-Nov-10 12:56:59

Has anyone got an older baby whos pretty much 'over' the reflux but still a reluctant feeder?

DS hasn't shown signs of reflux since starting on nutramigen but whilst refluxy developed a real aversion to eating which he's never got over. HE shows no signs of pain anymore, yet has the same attitude to food. Is anyone else encountering this?

Ladybiskybat Wed 17-Nov-10 15:31:12

strawberrycake sorry my LO is still in the throes of refluxness...there was a story in the Express (??) of a young boy who refused to eat that my mum cut out and kept for me. Think it was only last week, maybe the week before, could google that?

Fonts love it that GP said 'probably' has he referred you yet??

bethylou would love to help if I can. I have a friend of a friend GP, I could possibly ask for places to start??

Fontsnob Wed 17-Nov-10 21:22:30

No referal and no change in sick output but no more blood after that one time, thankfully! I am going to try cranial sacral therapy ( so long as it's not hideously expensive) and see how that goes. I have heard good things about it so we'll see!! Will let you know how it goes. How's your lo today Lady?

Ladybiskybat Thu 18-Nov-10 08:04:09

Fonts Ive heard it can be good too. Is that different to cranio-osteopathy? Remember reading that was good for colicky babies something about realigning their skulls after the trauma of birth?! My Lo has a cold as my dearest eldest keeps saying morning and coughing in his face. We had proper tears yest, eyes full of them. Had quite a bad day refluxing too. He's definitely not improving on these meds. Anyone on ranitidine and domperidone can you tell me how much and how often you give it to your lo and their weights. Im sure he's on less now than when he was 2 weeks old. He was 17lbs 2oz last week and takes 1ml of dom and 0.5ml of ranitidine x3 daily. Fast approaching the golden two week mark but reluctant to see gp due to previous antidepressants remark...shall have to find the time to brush my hair and get dressed properly to show him I am coping rather well this time:-P Think I will also video Ds during reflux moments so he can see it's not just in my mind! Goin to see hv today hope to see how much longer I have to wait for appt. MIL offered to pay privately but I begrudge having to especially as I work for the freaking NHS! On a lighter note, enjoyed purchasing a new 22" flat screen tv with dvd, a half price £60 iron and a new sensor mat baby monitor yesterday all for the pricely sum of £20...i love tesco vouchers! Hope you are all having better times

Fontsnob Thu 18-Nov-10 10:10:36

I think they are the same thing, am playing phone tag with the guy that does it at the moment but am really hoping to get an appt asap. Was watching dd being woken up by the reflux last night, seeing her little face all scrunched up because it hurt.
Definitely worth asking about the dose, dd is on 1ml of ranitidine 3x a day and is 13 lb. I don't know if your dose is lower as it is combined?
Good job on the bargain buying and good luck with the HV and the GP.....don't brush your hair too much in case they think you're trying to hide something...

Fontsnob Thu 18-Nov-10 10:34:01

Ooo head massage man coming here in half an hour! Better get us both dressed..... I know I'm very slovenly fingers crossed it works!

Ladybiskybat Thu 18-Nov-10 11:22:05

Fonts let us know how it goes. Having nightmare, hv has referred us but paeds got no records. Hv trying to chase it up not happy bunny

Ladybiskybat Thu 18-Nov-10 14:35:52

Ok big mess up with lo referral to paeds. Had to take him to gp (luckily one had blow dried one's hair today ) as hv thought he might need seeing on the ward as meds not making diff. Gp still reluctant to accept it's reflux as they've not confirmed it with ph study, fully supportive of me saying ds has a fabulous mum etc. Says paeds have recieved referral and will be seen by someone but ?? when. Get this though...thinks my 5 month old son has colic or ibs! I mean, irritable bowel syndrome???:-S then prescribed me an ibs drug not recommended for babies under 6 months, but he is easily that size(!) If I want to try it...you're the fricking doctor not me! Grrr so fed up angry

Scarabeetle Thu 18-Nov-10 14:51:51

Enfamil A.R. (anti-reflux) is a formula you can buy without prescription (to clarify what another poster has said) - it really worked for my baby who had awful silent reflux. It doesn't contain any medication - it's just got rice starch in it which thickens in the baby's tummy.

This was such a lifesaver for us, we were about to embark on medication & ended up not needing it.

Can order the formula at Boots.

Scarabeetle Thu 18-Nov-10 14:54:08

Also, worth reading a book by Allison Scott-Wright called 'The Sensational Baby Sleep Plan'. Allison cares for lots of babies with reflux problems and there's all sorts of useful information about it in her book.

umf Thu 18-Nov-10 17:13:36

Thanks for a brilliant thread. DS1 (almost 4 now) had terrible reflux; no help at all from HV or anyone. DS2 expected imminently, such a relief to know there's information out there.

One question: DS1 hiccuped lots in utero as well as once born. Did others' reflux babies do this? DS2 hasn't hiccuped once - I'm really hoping this means he won't have reflux...

narmada Thu 18-Nov-10 21:00:15

Umf,

re hiccuping. My DD hiccuped so much in the womb, and she turned out to have terrible reflux. My DS now 4 weeks, didn't hiccup quite so much - maybe once a day as opposed to about 8 times a day for her. Now, he does have reflux too, but I don't think it is quite as bad as my daughters was AND we have been able to act more quickly, armed with more information, and he was diagnosed at about 10 days and on meds by 2 1/2 weeks. I'm not saying that's necessarily great, but at least it means he's on the medical radar and getting help. Not sure if that helps???

lady what a balls up with the referral. Hmm, those doses sound low compared to what my son was on at 9 1/2 lb - he was on 0.8 ml of domperidone 6 times a day, and 0.55 ml of ranitidine 3 x daily. Have stopped that now and moved onto omeprazole 3mg once daily. I think it may be helping slightly although getting the damn stuff into him is quite challenging as it comes in tablet form and the tablets aren't quite as dispersible as the doc made out!

lady, IBS???! I am not a doctor, but hell, that sounds like a shot in the diagnostic dark to me. I think it's on the crying over spilt milk website where they have a diagnostic/ treatment pathway for reflux babies. Might be worth shoving under your doctor's nose - or maybe not if s/he is not very amenable.

narmada Thu 18-Nov-10 21:01:07

Sorry for the strange formatting there .... tired brain.

Fontsnob Fri 19-Nov-10 00:33:03

Cranio Man came and did his stuff this morning. Said she might have worse symptoms for 24hrs but she seemed about the same so will see if it makes any difference from tomorrow.

IBS???

Ladybiskybat Fri 19-Nov-10 07:20:48

Narmada, had heard of that website but never used it before. Will definitely be taking it into my gp. He really seems to dismiss reflux completely. Fonts, hope you have a good day and that it does work some. Umf, both my DS had hiccups in-utero. Cant remember either having them significantly worse than the other. On reflection now I think Ds1 may have had some reflux but being clueless and naive first time round I just thought he liked to stand up a lot and just didn't like being winded. Ds2 has awful reflux so who knows? We had an awful, awful day. Ds refused a lot of feeds refluxing badly. Went to my mums for tea, sat down to eat and had a momentary lapse of concentration that will haunt me for a long time...Ds2 reached and touched my plate...for some reason was so hot you could have fried eggs on it. So cue the most awful, haunting cry you have ever heard and trip to a and e where the receptionist looked down her nose at me and I was told to start moving hot drinks when he starts to walk. I was a dithering mess wracked with guilt that my poor little man on top of his reflux now has 4 huge blisters on his hand that are all bandaged up. Looks like a little boxer. Awfulmother.com...he really needs a break

Fontsnob Fri 19-Nov-10 10:15:45

Lady massive hug to you both. Sorry that that happened, you're not in anyway an awful mother. I accidentally got chilli on dd when she was about 6 weeks. It was on my hands from cooking ( I had washed them) and I was putting her cream on her and she started screaming. When i figured out what it was we got in the bath for a feed until it stopped hurting. It's such an awful feeling knowing (and hearing) that you've caused your baby pain. Hope your day is better today.

narmada Fri 19-Nov-10 10:23:59

layd it's not your fault- don't blame yourself. it is the sleep deprivation. we have all had temporary mental 'freezes' like that. hope ds better soon.

TottWriter Fri 19-Nov-10 15:55:54

DD has just been "diagnosed" as having reflux by the HV, which prompted me to read this thread from the start (with much nodding at symptoms, and gratitude that she does at least sleep at night!)

So glad I found this thread - she is now 4mo, and vomits all the time. Well, not literally. She tends to vomit a little straight after a feed, especially if she burps, though she doesn't really get windy (BF baby). But whe isn't often happy on her back (though doesn't seem to mind lying on the changing mat confused go figure!) and apart from at night, doesn't really sleep unless she is in my arms. Even at night I cuddle her to sleep then lay her in her sleeping bag. During the day she likes being upright, preferably being held in a standing position, or being carried upright, as long as I am standing too and not sitting, which makes for a lot of physical tiredness, even though I'm not sleeping that badly. I also have a 2.5y.o DS, who gets under my feet a lot if I'm doing laps...

Since reading this thread, I basically haven't put DD down blush and have been holding her upright - she's fast asleep and has hardly throuwn up at all, which is a massive relief.

I'm also lucky that she takes a dummy. She refused at first, as she used to gag on it, but we tried a few different types and eventually she took to the Avent 0-3 month ones, though they only stay in for a few seconds. Still, it's enough to calm her down when she's screaming too much to latch on, as long as it's not pain. (If there's anyone still trying with dummies, what we did was rest it on her lip for a while and just let her lick at it, and then bit by bit she got used to having it in her mouth. It also seemed to get easier for her as she got bigger.)

Someone mentioned earlier about things being better in the mornings - I would definitely agree with that. DD is at her worst in the evenings - the other night she was quite literally screaming full bore for an hour solid, and only stopped when she wore herself out so much that she was half asleep, and I was able to get her to latch on for a feed. We have good days and bad days, but the bad ones end up with me walking circuits of the living room until past midnight, silently begging her to go to sleep. sad DP is my full time carer (I have epilepsy), but has clinical depression himself so can't cope with the stress when she is crying endlessly - he struggles with DS who obvioulsy wants more attention at times. So hard to do things with him when DD cries most of the time if she is put down. We have a sit-me-up which helps for a while, and on good days she will lie on her back chewing a toy, but a lot of the time she has to be held or she screams.

Oh god, just realised how long this post is going to be... sorry!

krisskross Fri 19-Nov-10 16:00:03

our DD had silent reflux- repeated talks to HV and breast feeding counsellors could not get to bottom of it. Gaviscon did nothing but omeprazole was like a miracle- she literally changed in 3 days from 4 feeds out of 6 being awful to 4 feeds out of 6 being fine.

We only got to the bottom of it because we were desperate and paid £100 to see a private BF counsellor who suggested reflux within mins of watching her feed.

Good news it- it gets better! She is 16 months now and we have not given her medication in 4 months and she is fine, so don't give up, it will get better.

Good luck.

narmada Fri 19-Nov-10 19:49:00

kriss I am really glad your DD got better. Hurray. I have high hopes for omeprazole. Do you mind me asking, did you have the LOsec mups form for your DD? And how on earth did you make it up if so? we have to give our 5 week old DS 3 mg and doc says dissolve a whole tab in 10 ml water and draw up 3 ml of the solution. However, this seems to get a random number of the active beady bits in the syringe, which then get stuck in the end of the syringe! Have tried a spoon, again, I am estimating what 3ml/mg looks like and he also spits it out when delivered in this manner!

tott sorry to hear about your DD - you will get lots of support on here.

Scarabeetle Fri 19-Nov-10 21:49:57

Tott, it's tough right now but at least your DD is diagnosed now so you know what you have to treat. BF is great, but if you do go to formula then switching a specialised formula can make a big difference your baby has reflux. Seems to me a lot of BF babies get loads of meds to treat reflux (as do FF babies, granted) but there are formulas which can help too. That's just my view.. I'm ready for some criticism! I say it because I think I'm lucky that when we found out DS had reflux I was already FF so it was easy to switch to an anti-reflux formula (conceptually as well as in practical terms, IYSWIM). He was a nightmare to feed before I got him on Enfamil A.R.

Fontsnob Fri 19-Nov-10 21:58:08

Well, at the risk of jinxing myself, dd hasn't been sick since this morning! Don't know how long it will last but maybe the cranio-sacral therapy treatment works?! She also hasn't been at my breast all evening like usual. grin fingers crossed, wow how amazing would a life without reflux be!

Lady how are you and ds?

Fontsnob Fri 19-Nov-10 22:13:20

Okay AND she is asleep in her cradle before 10pm with NO crying out!! Please please let this last!

Ladybiskybat Fri 19-Nov-10 23:25:40

Tott sorry to hear about your lo. It is so very tough, especially with another demanding toddler running around. Your lo sounds very similar in symptoms to lots of los discussed on this thread so hopefully there is some advice of use to you somewhere. fonts really really hoped it's worked! Did you have to get a specific referral for him or just a phone book job? Thanks for concerns, we've had a bad day. Seems like now it's most feeds we're having arching and pulling off and he just seems in so much pain. narmada my gp prescribed us Lansoprazole in dispersable tablets for my lo at 4months and said to put the tablet into his mouth?! Decided to just mix it up with some water in syringe...there is a knack to it. I found a big syringe was needed and you have to keep shaking it once the tablet is in the water to keep the little beads moving. Also if you tip the syringe up and down as you put it in their mouth it keeps the beads from blocking the syringe end iykwim? Have decided that if Ds has bad time over weekend to go to walk in gp surgery and over emphasise his problems to see if we get a second opinion...can't be waiting 10 weeks for appt. Hope you have a good weekend ladies

Lydee Sat 20-Nov-10 09:42:19

New Mum here! Don't know if anyone else has had this problem?! Baby has reflux, is on domperidone and omeprazole, he seems to be fine feeding and then around a hour after a feed he scrunches up and screams with a real 'pain', and this can last a good hour or so, his poo is sometimes water and sometimes he doesnt poo at all?!? he is eating actimel - he eats really fast too, did anyone find changing milk a good idea - to cow and gate? Any help sooooo welcome!

TottWriter Sat 20-Nov-10 10:51:28

Lydee, don't know what to suggest. I FF my DS, and I recall being told to seek advice before changing formulas - if your DS is still in pain despite meds, I would definitely talk to your GP/HV, and be pushy. Something I learned from my mum is that sometimes you really have to get tough with other people to protect your DC; the medical profession is under a lot of pressure and tend to deal with the loudest complainers fastest - obviously as long as you aren't rude.

Can you phone your HV and ask about changing formula? From what I've read here, sometimes changing to a lactose free formula can help. Ask about soya based formula.

To everyone else, had a rubbish evening with DD last night, after a good afternoon. She was screaming until her throat went hoarse. sad Much better this morning though, but sleeping a fair amount.

Something I wanted to ask - when DD throws up, sometimes it's really mucousy, with little clumps of the milky part; is that normal? Other times she possets, and other times it's a more homogenous thickish vomit. (sorry for the TMI) What is it "supposed" to look like?

Should point out that I'm 99.9% certain that DD is teething ATM, though no sign of that pesky tooth just yet (DS was the same, a good month or two of teething before it appeared).

Ladybiskybat Sat 20-Nov-10 11:04:26

tott v quickly am on the move but my Ds proj vom from birth to 12weeks. He often had mucousy sick with lumpy bits in. Think it's partly digested or something like that. He possets often too. I wouldn't worry about the sick type just see gp if there's blood in the vom.

narmada Sat 20-Nov-10 16:08:58

thanks lady i will have a go with a bigger syringe - got a neurofen one with a bigger hole in the end.

absolutely hideous day today here, me and DS crying for the large part of it. seem to be going backwards and now we are seemingly having breast refusal too. he will now only sleep in the day while being paced around and DP and i feel like hamsters in wheels. it's breaking my heart and i just feel like running away from it all.

hope everyone better than us.

narmada Sat 20-Nov-10 16:11:29

to cap it all i am concerned about milk supply owing to breast refusal, and can't express to maintain it as have DS strapped to my chest (in a sling) all the time.

Fontsnob Sat 20-Nov-10 18:56:05

Narmada sorry to hear you are having a bad time. I am going to tentatively suggest giving the cranio-sacral therapy a go. I don't think dd suffers as much as your lo but I think it's worth a try. My doctor suggested it but we had to find our own therapist, cost £35 so not cheap. But there is no doubt that she had been better yesterday and today. Still little possets after eating but nowhere near the usual volume of sick that has been the norm. I have no idea if it will continue like this but I'm glad I gave it a go. Hope everyone has a good evening and happy babies.

Fontsnob Sat 20-Nov-10 19:01:33

tott there has been no particular pattern to dd's sick consistency either, aside from being consistently sick.

narmada Sat 20-Nov-10 19:18:46

fonts, we will def give anything a try. have to find a local cranio-sacral person. anyone know one near kingston upon thames??

narmada Sat 20-Nov-10 20:37:54

OH my good god, DS has been screaming inconsolably since about 5 pm, when not asleep for very short bursts. He is completely refusing the breast, we don't konw what's wrong. It is horrible and we are wondering what on earth to do....

bethylou Sat 20-Nov-10 22:37:33

Flying in and out this evening..
Sorry to hear about those of you having hard days - especially the burnt fingers. DS1 fell down a friend's stairs last year and I still haven't forgiven myself. HV took one look at the bruises on DS2 this week at his 9 month check and started on the safety lecture - does she really think I don't try and protect him when ever possible during his cruising episodes?!

Having had 2 DS with reflux, I found they both hade hiccups and both refluxy. This time round, like someone said above, I recognised it fast, acted immediately and dread to think where we would be otherwise as he is much worse than DS1 was.

DS1 and 2 have shown aversion to food at some points. DS1 saw the speech therapist (as they deal with sucking and swallowing) and they helped us. Your HV can refer or GP.

Would be interested if those of you who know GPs could ask how to spread the word about reflux. It might be a slow process but I am determined.

See you all in a few days. Hope they are good ones for all of you.

Fontsnob Sat 20-Nov-10 22:41:07

I'm so sorry you are all having a bad night, is it getting any better now? I really don't know what to suggest, maybe a drive in the car? Does that settle him? How about you both in a warm bath and trying to feed him in there. I really hope it gets better.

Fontsnob Sat 20-Nov-10 22:45:18

Sorry x-posts that last one was for you Narmada but was just thinking perhaps driving not a good idea if you're completely knackered.

Lydee Sun 21-Nov-10 01:42:54

thanks tottwriter - think I maybe getting to the bottom of this - dont know if anyone else has had this problem? - but seems that diarrhea happens after meds? perhaps he is not suited to either domperidone or omeprazole (omeprazole given on empty stomach?) - will speak to HV on monday for suggestion, hope everyone gets a better night, its 1.37am and he's finally asleep - for how long who knows! re: sick sometimes its like thick mucus and sometimes just a whole lot of milk, sometimes screaming followed by little posset throw up - looks like there is no answer as to what it should be - it just is! I find a walk outside is the answer - day or night, maybe its the fresh/cold air?

Ladybiskybat Sun 21-Nov-10 09:50:02

narmada huge hugs. Its awful when it gets to that stage and I really hope you have managed to get some sleep. We've not had a great night but think im used to no sleep now. Ds is now throwing his head back after each feed which is really freaky, its like someone is yanking his hair. Have not given ibs meds dont think it is but going to PALS tom to ask for advice re gp-referral-general rubbishness of understanding. Think I might look for head massage man and I am having baby massage session on thurs. Hope you have bearable days

narmada Sun 21-Nov-10 10:58:49

thanks guys - the head throwing back thing does sound like sandifers doesn't it, lady? glad you going to PALS.

we had an ok night - he conked out for 3 or so hours around 11 pm, and today i am working on enforcing naps for DS by whatever means. think being too tired had a large role to play in yesterday's horror. i am still worried by his decreasing milk consumption tho. can tell by his outputs....

TottWriter Mon 22-Nov-10 09:20:51

Had such a good day the other day, aside from a bout of screaming last thing at night. I put that down to DP having a little bit too heavy handed a play with her, and thought all was going well.

Yesterday I made the mistake (potentially) of having a bowl of cereal in the morning, which seemed to trigger a day of throwing up a lot. Okay, so I'm cutting that down or out. I think I'll also switch to redbush tea to cut out as much caffeine as I can too.

So just quick question - how long will it take for that to stop affecting my milk supply? In other words, how long until I know whether it has made any difference?

narmada Mon 22-Nov-10 12:14:02

Glad you had a good day tott, and best of luck with the dietary alterations. That sounds really positive. Can't answer your questions tho - sorry -much use as chocolate teapot.

Made the impossibly hard and for me heartbreaking decision to switch DS to formula, as I am at complete breaking point and need DP to do the night shift on every other night. Impossibly hard also because I know full well that it may make the reflux worse. But the alternative is me ending up completely broken and of use to no-one.

Got a referral to a paed and now back on the ranitidine/domperidone regimen after we didn't get along too well with the omeprazole. What a hideous nightmare. Hoping it will start to seem a bit less bad if I can get a bit more sleep.
We are slowly learning how to manage DS a bit better - it involves a lot of walking around and keeping upright, holding for naps etc, so hopefully that will help too. Such hard work though.

narmada Mon 22-Nov-10 12:16:17

PS thanks Fonts for general sympathy and suggestion of car ride. You are right though, there is no way on earth I can drive safely in this condition. He pukes in his maxicosi car seat anyway but driving did work for my daughter so maybe it will work for him in time.

ellnlol Tue 23-Nov-10 19:10:29

Hi all. We've been out of the loop for a while, in a 'dark place' but just skim read the last few pages and feeling much better again - what would we do without the MN reflux angels?! 4 weeks ago our HV sent us back to the GP for different meds - IG gives dd awful constipation and doesn't work on reflux (silent). GP refused and didn't like being told what to do by HV! But did offer paed referral if I 'thought it would help', which I accepted (appoint this fri). HV then decided I had PND and sent in counsellor who took a family history (and yes there are some skeletons) but has now decided I need to 'learn to bond better' with dd. Cried for two weeks because I've screwed up, then took a step back, decided I didn't have PND but was sad cos dd is often in pain and crying, and we have a great bond, but I'm knackered. When this is all over I'm really up for 'educating' the health professionals - probably with a big stick! GP did suggest paed may do a ph test - anyone else had one? What is it and did it help? Hang in there if you're suffering tonight, big hugs x

Ladybiskybat Tue 23-Nov-10 19:56:55

Hi ladies its been a mad time for us too. DS fingers all mending nicely and no permanent scarring so very happy now. His reflux is getting worse daily now. Im noticing my usually happy to lie on my back and kick for a while little boy is now not wanting to lie for long times, waking up twice in the night then coughing and choking and he is struggling to feed without pulling off or crying and arching after 3mins. Ive been badgering the receptionist for our paed referral and she has been amazing and not only got me the referral sorted but got me one with a gastro consultant and its on monday! I think I shall cry when I see her. Such an emotional wreck at the mo, should make you all smile but I was on a dual carriageway yest and a fire engine flew down so the cars parted as they do and I started crying because people moved out of the way...i mean what is that about?!:-S narmada I hope things are better with you now and you are finally getting some sleep. How is Ds reflux since starting formula? ell as someone who has had awful times with the gp I would gladly share a huge stick with you...antidepressants my ass! The worrying thing is I bet some people have them thinking well the doctor says so I should. Think it's goin to be a long week til Mon. Sorry for text speak on phone. fonts how is your lo since head massage? Are you recommending? Hope you are all having an ok time of it

ellnlol Tue 23-Nov-10 20:14:55

oooh I've cried for emergency vehicles getting through too Lady, and the very squashed badger in the road! Exhaustion is a bugger isn't it? I'm annoyed that I agreed to the counsellor, and think the HV will push for anti-d's again this week. I need to stick to my guns and get past friday - expecting great things from paed! Take good care.

Ladybiskybat Wed 24-Nov-10 13:34:41

Will someone please tell me their secrets to keeping on top of daily tasks as well as caring for lo with reflux? Im not finding enough hours in the day to wash, clean, tidy and shop with a lo who needs to be carried and cant always sling him. Ive sacrificed my weekly vacuum for every other week blush (this is massive for me as im monica from friends obsessed with cleaning!) and just doing kitchen and bathroom clean weekly as for other things ??! confused

narmada Wed 24-Nov-10 15:07:52

oh lady i have no idea. impressed you are managing all you are managing. i am also going insane with the slinging and carrying. it's all well and good those who say let it all slide but you have to have clothes to wear and food to eat, don' you?

ellnlol Wed 24-Nov-10 16:46:27

Can't help on the housecleaning front - I've given up, which has also been a big deal for me, hence the dark couple of weeks! I can load the washer one handed and then kinda drape the wet clothes over a horse. I grocery shop online and the delivery guy is great at bringing the stuff in whilst I stand and watch wth a sleeping or screaming baby. A good friend told me to aim to do one thing a day, even if it's just wipe round the basin, and I hang on to that advice cos I can manage it! My big issue is - how do you cook?? confused

Ladybiskybat Wed 24-Nov-10 20:00:55

Well cooking I agree is difficult and cant find myself trying to get the kitchen straight at night time so its less to do with a baby who's awake. I found that my DS will sit in a mothercare's own range bouncing chair the angle seems to be ok...but when I say sit I mean about 15mins max so try to get what I can done in that time. Forgot about the online shop me thinks its the way forward. As for cleaning then...one job a day you say? I must admit I feel less of a failure even if Ive just done the dishes. narmada how's you lo doing now you're ff? Have started Ds at waterbabies today, managed about 25mins without niggling and didnt cry at all so think it could be a goer. Does anyone miss the fact they dont get to 'cuddle' their baby? If he falls asleep on me I love it so I can get to hold him in a nice way not just standing up on my lap facing out or walking around facing out. I miss that

narmada Thu 25-Nov-10 16:34:27

lady i am not sure he is any better or worse on the formula TBH. it's more of a faff but i am surprised by how un-guilty I feel about making the switch. i am just about the most pro-BF person you could meet...

Anmyway, things took a turn for the worse with my own health and I am now being treated for PND. I defo do have it - had it with DD and also history of depression prior. Every day is a battle. Mum is here, hubby off work being brill and doing nights, DD now started waking with bad dreams at 5.30 each morning. we are in a fairly bad place . Had 4 hours of screaming this morning....

Sorry not to impart more cheer but glad to hear toy guys are up to some normal stuff like waterbabies etc!

narmada Thu 25-Nov-10 16:35:00

you guys, i meant

TottWriter Thu 25-Nov-10 22:17:22

Oh, narmada, big hugs. Still, with any luck you'll start to feel a bit better soon now that you're being treated.

The cutting down on milk doesn't really seem to be working so far - today I have had one cup of tea which someone put a splash of milk in (after DD had spent half an hour screaming her lungs off at our p&t group) and any potential milk solids in other food. DD has been just as vomity as ever - if not more. I'm taking her to be weighed tomorrow so I'll ask the HV what to do. Sitting her up does nothing unless she is up 100% of the time, which I can't do (can't wear a sling as I have epilepsy, DP can't as he's possibly fractured a rib).

Don't know how much luck I'll have with potential medication though, as she's BF and only slightly under the 50th percentile. (as opposed to halfway towards the 75th when she was born + post initial loss)

TBH, it's more the fact that I can only ever put her down for a few minutes at a time, and even then she's often whining. DS I could put down on a mat and watch play. DD I hold almost all day, and it sometimes feels like she's either feeding, sleeping or whining/screaming. I know it will get better, and oddly enough when the screaming is at its worst I sometimes zone out and feel fine, but there are times (like now) when I look at her and just feel that dread of anticipation, waiting for the screaming. I'm also sick of being covered in...well, sick.

Fontsnob Sat 27-Nov-10 17:22:31

Hi ladies, been away all week visiting family which has been lovely. Lady I would definitely recommend the cranio-sacral therapy. Dd has been amazing since and its been a week now. Still giving her the Zantac but only twice a day now, she is still sick occasionally but nowhere near as much as before. She sleeps better too. I really think it's worth you giving it a go. Narmada glad you are getting support sorry that it is so hard at the moment.

Ladybiskybat Mon 29-Nov-10 19:06:07

Hi ladies been out on a bad week for us. DS definitely going downhill fast with night wakings and being unable to settle. narmada big hugs to you, hope things are getting easier with you and its good you have good support around you. fonts thanks for recommending head massage I think Ive found someone I will try. Hope things are still good with you. tott hope you are finding things a bit better, I agree with the anticipation of the scream, it gets me down too. We finally saw our paed today and to say im unhappy is an understatement. It probably doesn't help that the doc who saw us happens to be the one who when DS1 was 9m and having resp probs that he was just a 'wheezy' baby and nothing could be seriously wrong as he was so smiley and happy and 3 hours later He'd been diagnosed with pneumonia and a collapsed lung...the faith has already vanished. She saw and examined Ds2 and guess what...He's a happy, thriving baby! It is reflux not IBS so good job not given IBS meds. Has upped domperidone to 3ml x 4 and ranitidine 2ml x 2. Also to take one sachet of gaviscon after each feed confused wanted to review him in 2 months. I pushed for 1. Asked about weaning...said it will help. Told her Ive heard that's not always true...she then says yes, doesn't always help! So desperate for someone to understand and we had the `give the medication 4 weeks` to work lecture. Will persevere nonetheless. Hope you are all better than us.

Fontsnob Fri 03-Dec-10 23:15:06

Hi, how are you all doing? Dd getting bad again think I will try more head stuff, did anyone else give it a go! Got the big wedding tommorow, dd with mum for most of the day. I am absolutely dreading it!!

narmada Sun 05-Dec-10 21:20:54

oh dear, sounds like the reflux rollercoaster still doing it's damndest to keep us all on our toes.

tott , surely they should treat with meds if in obvious pain, never mind the supposedly 'thriving' appearance. hope you get some relief.

lady sorry not more luck at the paed. what a disappointment. you kind of hold out hope that they will have all the answers don't you?

i really lost it this week, on verge of admitting myself to mum and baby psych unit. just couldn't see a way forward and wanted out, or to be away or something. got extreme anxiety, PND and insomnia, rattling with medication....

DS sems ok-ish on ranitidine at max dose - e,g, less crying but still squirms and grunts all night, and takes ages to settle, with pacing + dummy. DP and DD gone to in laws for a break. DP did the last 12 nights with DS straight while i had my mini breakdown. mum is now here and we are taking it in turns - wonder how she will get on with her first squirmy, grunty, writhy nightshift.....

gool luck everyone, hope you have good weeks.

bethylou Mon 06-Dec-10 14:03:40

Just passing through again and sorry to hear that you are all struggling at the mo. Narmada sounds awful for you - big hugs. I hope the meds will help soon and glad to hear your family are being supportive.

Lady I am so with you on the paediatrician front. We've had to wait 4 months since the last appointment (bearing in mind that DS2 is now 9 months) and the man suggested we should probably cancel it as 'he'll be fine by then'. Well, like DS1, he's not fine at all. The daily small vomits are definitely much improved (down from 20 to about 2 - to give some of you some hope!) My washing machine feels like it's on holiday after 7 months of constant washing.

However, last week DS2 was teething again and was copiously sick every time we tried to feed him milk or solids to the point that we had to feed DS1 separately as it had put him off eating too. One day DS2 only kept in 4oz of water from a syringe (and his breathing monitor went off 6 times in 2 weeks-when the paediatrician says 'healthy babies don't have sleep apnoea')! I shall be keeping my appointment in 2 weeks, taking my husband for reinforcements (I'm not just a fussy mother, honest!) and arguing with the stupid man a lot!! I too am fed up of being covered in sick!! (and have a phobia of it too-someone is clearly having a laugh at my expense!!)

Love to you all.

ellnlol Mon 06-Dec-10 18:57:10

What is wrong with the medical profession? If you turn up with a baby who isn't actually screaming at that point in time, you're just being paranoid. And the next person who asks - is she your first, is likely to be screamed at, and not by dd! Our paed appointment was ok, and we now have the coveted ranitidine, and a review in 6 weeks - still don't know why our GP couldn't have done that though. Felt like we were walking out of the hospital with the holy grail! So far, things seem a little better, although last night was thrashy. Not sure what to say, other than, it's good to share the good times as well as the bad. The smallest thing can change my outlook - dd had a lovely giggly, chatty few moments today, with fantastic eye contact, so the rest of the day be damned - this counts as a good one. Hope you have a good night - or 'good enough'! x

Ladybiskybat Wed 08-Dec-10 19:51:45

Oh gosh ladies it sounds as though everyone is having awful times. narmada what can I say? Hope you're feeling more positive now and aren't mum's fab creatures, dont know what id do without mine! fontshow was wedding? Boo hiss that head massage not worked for too long. Still not got my act together about ours. Things are awful with us now. Had week away with mum and two boys and mum saw what it was like over 24hours and made me realise its not in my head! Had follow up appt for 2 months really unhappy especially as we were told 1. Went to hv on mon and luckily (!?) DS didnt stop screaming and she's never seen him like that before. Said to check on appt but thought id try him on solids to see if it helps like they all say it will. Had small bit of baby rice mon and tues was fine for half hour then had a nap both times then on waking screamed until bedtime and was difficult to settle. Tried carrot today, kept shuddering and wretching. I dont know what else I can do? Anyone else weaned who has advice...please? Hope you're having goodish week x

narmada Wed 08-Dec-10 21:38:13

lady really sorry you are having rough time of it, reflux is hell i think. it is good in a way for other people to see what it is really like - eg your mum. No way is it in your head, btw. It is a shame that the paed is making you wait so so long for a review. 2 months is ridiculous. you would know if the ranitidine was working inside 2 weeks surely? i can't imagine that a doc would make an adult with chronic reflux wait 2 months for a medication review....

Ladybiskybat Wed 08-Dec-10 23:24:52

narmada you are so right. The domperidone and ranitidine have never worked for him and I did try to tell her that at the time. When I rang to query the appt receptionist said doc had put one month follow up on the screen so not sure what's happened. She also said I can request consultant If I want to. Said I have no probs with registrar just that one cos of prev issues with Ds1. Receptionist then lives up to stereotypical nature tries to tell me the doc had only just joined them and I must be mistaken-like id forget something like that. So mad at the mo. Too much to do and sort with no spare time to do it cos DS not good. It's a horrid horrid thing and I feel like im going mad and people think im dramatising it all. No one gets it

narmada Thu 09-Dec-10 11:32:50

No one gets it, you are right Lady.

I have just had my postnatal check. I explained to the GP (not my usual one) that I had very severe pnd and a child with reflux. While she was very sympathetic and kind, she told me that maybe I would feel better if I had sex with my DP, and I should try and go swimming every other day. And get some sleep.

Oh, and the reflux will be gone in 5 weeks because it never lasts longer than 12 weeks.

Well, thanks for that.

Ladybiskybat Thu 09-Dec-10 13:35:43

narmada sex with DP? I have heard it all now lol. Where on earth do they get their training these days? 12 weeks I wish! Am intrigued to what you replied with. Id have snapped me thinks!x

narmada Thu 09-Dec-10 16:26:25

I wish I had some witty riposte for her but I am just in such a mess at the moment and so I just carried right on weeping blush . But when I pulled myself together I did tell her in no uncertain terms that there was no chance of sex at the moment. Honestly, the thought almost makes me laugh, not because I don't love my DP but because it is a battle to get through the everyday shite, never mind the add-ons. She did make me take away some leaflets about contraception. I think we will be considering the male or female snip when this crisis is over...

bethylou Thu 09-Dec-10 20:59:24

Good grief! This really takes the biscuit doesn't it?!! I know that you haven't got the time, energy or inclination to complain at the mo, but please do read this back once the crisis is over and get the GP some extra training. That's what I did with a couple of ours.

Lady I totally agree that not many people get the problem. I've been moaning about my DS2's reflux and sleep apnoea now for so long that I feel even some of my good friends try and avoid it coming up in conversation as there is just nothing they can say and they just think it's a bit of sick!!

narmada Fri 10-Dec-10 12:36:58

Belthylou, the odd thing is that my son's regular GP is really excellent. No hanging around for weeks and weeks on the gaviscon, he is 7 weeks and has been through all the meds already, and when they didn't seem to be working he arranged a referral straight away. It's such a shame knowledge is so variable.

I know re. people getting sick of hearing about sick. I have one really good friend whose daughter has severe silent reflux, much worse I think than my son's, and she gets it of course, but not too many other people do.

We seem to be having some luck with maximum dosage of ranitidine at the moment - well, t hat is a relative term as DS still has to be walked around and around and if we didn't have the dummy or do that .....

Stopped the domperidone as it seemed to make things worse.

Ladybiskybat Fri 10-Dec-10 20:56:26

I even think my family think shut up about the subject. They never say anything of course but it takes up so much of my life its hard not to talk about it. None of my old school friends have any LO so I became a bit alienated when I had Ds1 but even the friends I have with babies dont really get it. One friend I work with had little girl few days before my Ds2. She's having to have tests due to increased head circumf and they think hydroceph so I try not to mention it to her altho she asked the other day and said, so it's just reflux then? Cant really say much more to her with what's goin on with her dd. Anyway. Saw hv yest who had no other ideas apart from trying cooked carrot sticks for him to eat but they didnt work. So Ive been ringing the clinic all week to ask for advice from paed. Consultant herself called back and after being asked to cut out diary for 48hrs and to stop weaning, I see her monday. Result. Im taking my mum who worked as play specialist on the ward with her when she was junior doc...hope she remembers mum so she knows im an ok person! I get such confidence issues sometimes. Just keep fingers crossed please. Hope you all have a good weekend. Time to put up the tree x

bethylou Fri 10-Dec-10 21:16:19

It's so hard isn't it to get a balance between trying to get the needs of your baby met and coming across as a fussy mother? I shall be taking my DH to see the paediatrician this time so he can explain that he was the one who picked DS2 up the time he didn't start breathing on his own. Quite why I would be making this shit up I don't know!!

Lady I also have friends with more complex issues to deal with with whom I try not to talk too much about the simple reflux, but I feel that we are all dealing with tricky stuff and it's relative to our situation. It is totally hell and I think its impact is not fully understood.

DS2 seems to be teething again so I hope this doesn't mean we are housebound for the next week by the extreme vomiting that it created last time. Perhaps he should wait for my appointment with the paed on the 20th?!! DS1 had us up since 2:15a.m. with earache for the first time ever - I'm shagged!

narmada Sun 12-Dec-10 10:19:03

Some positive news from us - DS has fallen asleep in his new mechanical swing. Twice. Admittedly, he needs to be swaddled and with a dummy in his mouth too but this is nothing short of a miracle as previously it required me to pace around the house for hours to get him off. Which was just exhausting.

bethylou Sun 12-Dec-10 22:37:44

Fantastic. I'd heard they were good. Long ,ay it last for you. We've had a poo smearing incident from DS1 (aged 2) and horrid wheezing from DS2 all day today-hoping for a better day tomorrow, despite DS2 teething again, thus puking for England being likely.

driedapricots Mon 13-Dec-10 10:27:15

hi, my ds is 20 weeks and diagnosed with silent reflux a couolke of months back. his medicines dose has just been upped and it seems to have affected his poo! has anyone a similar experience - it has gone all curdled??!! i wouldn't worry too much except it seems to have set off a very sore bum indeed...
thx

narmada Mon 13-Dec-10 11:54:07

Is it ranitidine and domperidone, driedapricots? I think one or both can affect their poo....

bethylou oh dear, poor you. That sounds very unpleasant. I can sympathise because my DD has now decided that run-up to christmas, hot on the heels of my mini-breakdown and the arrival of a new baby is the perfect time to potty train.

bethylou Mon 13-Dec-10 20:45:14

Narmada That's exactly what my DS1 did when DS2 was 3 weeks old. DS2 was only 23 months so it was a trial but I didn't really feel I could ignore his suggestion! Good luck! Hope you are feeling better.

Ladybiskybat Mon 13-Dec-10 22:52:28

narmada fab news about the swing long may it work. I found it worked for my DS2 for sometime and certainly feels weird to give your arms a rest?!good luck with the potty, hope she gets it quickly. bethylou hugs to you. My DS1 is behaving himself at the moment. We've not had smearing but have had weeing in all sorts of places for attention, tells me this too. driedapricots my Ds2 had poo that seemed a bit lumpy and not fully digested. Really vinegary and often has sore bum even tho he never sits in a dirty nappy. I found bepanthen works really well. Sort of news from us. Seen consultant today. Finally says yes, it's reflux and has given us omeprazole and insisting I do dairy free for 4 weeks...fair enough. Not like it's xmas and I want to eat cheese, pastries, chocolate, custard, cake, mince pies ha ha. Also saw a dietician and got told off for not having enough calcium intake myself now have to take supplements. Got review in 4 weeks hope we see some improvement. Poor little man no weight gain this week now near 50th having been on 91st and his length has dropped a centile too. Got to get better ??

driedapricots Thu 16-Dec-10 20:59:48

sorry i've not been back on since posting question!! ds is on ranitidine and domperidone yes..doc said quite normal for poo to change like this but his bum is actually bleeding it's so sore hmm i have steroid cream for it now as doc said best to contune with medication and treat bum seperatly. what's the difference with different types of medication..i see you have omeprazole lady
also..weaning... becuase ds doesn't ever seem that hungry and is tiny (and i don't have enough hours in the day)i hadn't really thought about it, but he is 21 weeks and i've heard it can help...what do we think, should i start??!
finally sleep....do reflux babies generally not sleep through? it's really getting to me now. dd1 was sleeping through at 12 weeks and we're still no where neat with ds2..he's up every 2/3 hours - the most he's ever slept in one stretch is 4 hours :-( i'm exhausted!
it's so good to have this support thread..and astonishing how many babies (and parents) are suffering...

Ladybiskybat Fri 17-Dec-10 04:10:27

driedaps well weaning is interesting! My LO is now 25 weeks and he is awake anything from 2-5(as it is tonight) times. I agree, it's so exhausting. The dietician told us to start very with small amounts of food. DS2 did gag and shudder quite a lot but she said to give constant praise and touch and kiss around his mouth. Also to try purees and baby-led weaning where he has sticks of cooked veg. Purees def working better. He is having only tiny amounts of food but it's getting more each day. He is still refluxing but He's not been screaming for hours like he did at first...watch this space keep fingers crossed. I asked question about weaning helping and they said it tends to cos food sits in tum and doesn't reflux back up the oesophagus. Although, it's not always this simple? Id say if you think He's ready then try some simple carrot or apple and see how he does. Maybe talk to hv for input, mine's been really helpful. Trial and error im afraid. Hope it helps some x

narmada Fri 17-Dec-10 15:09:56

I think weaning helped my first (DD) who also had reflux, although she was slow to get it and really didn't eat a great deal till she was around 18 months. One thing I did notice with her was that she wouldn't have much to do with purees and absolutely hated not having control over what went in her mouth. Apparently this is quite common with reflux babies. So we did quite a lot of finger foods.

We had our paed appointment yesterday: doc suggested keeping him on ranitidine only, wasn't keen to switch to omemprazole as ranitidine was doing 'something' even if he wasn't totally better. I did say he still has problems with discomfort and especially sleeping, but she kind of brushed it off,

I was quite disappointed with that. And then...she also commented that DS has a pronounced weakness in his neck muscle (head lag or some term like that?) and that his arms are more floppy and have less muscle tone than would normally be expected at his age so wants him to have blood test and chromosome analysis 'to make sure we're not missing anything'. She said she hoped it is just transient and nothing more long-term, and we are trying not to worry but it is an additional thing we could have done without at the moment

Quick question - for those of you whose refluxers have feeding aversions, at approx what age did they start showing?

narmada Fri 17-Dec-10 16:05:32

PS re the sleeping, driedapricots, IME reflux massively affects the ability of babies to sleep. So you have my sympathy absolutely. DD used to wake up very many times each night, and was very difficult to get to nap in the day. It was the pram, the sling, the car seat or nothing. Things improved hugely when she could roll onto her stomach at about 6 months. Her reflux improved gradually too, to the point where when we were sure she was pretty much unaffected by it we did some sleep training with her.

My 8 weeker is another story entirely. He is also very difficult to get to sleep during the day. It takes serious inducement. At night, though, he wakes only once for food BUT does take ages to get off in the first place (usually 11 pm or after) and has to be coaxed back to sleep after his middle-of-the-night feed. His reflux is worse than DD's was but he is on medication whereas she wasn't.

I suppose what I am trying to say driedapricots is that based on my experience reflux definitely, definitely affects sleep but how much and in what ways varies depending on the baby and their temperament, as much as anything else.

bethylou Fri 17-Dec-10 22:24:51

Driedapricots I have found with both of mine that reflux definitely affects sleep. I'm afraid that DS2 is 10months now and still wakes about 2-3 times a night in discomfort. The first time round with DS1 it nearly finished me off. This time, I'm more philosophical and feel it will end in the end. Sorry if this just makes depressing reading-you have my sympathy, for what it's worth. The HV suggested this week giving him calpol at bedtime for a few nights to prove whether or not he is waking with discomfot. Night 3 tonight and so far a vast a improvement. Will be asking consultant on Monday how often we can use it (amongst many other questions obviously).

Ladybiskybat Sun 19-Dec-10 19:08:21

narmada How rubbish of your paed to dismiss your opinion about your lo...you know best. I wish id have stuck to my guns with our first appt but they make you feel like it's just a trivial thing that will pass and you just have to get thru til they're walking, sitting etc. When does your LO have tests? Big hugs. Also, now you come to mention it altho Ds2 will eat purees better than sticks of food think it's due to the wretching when having sticks. With the purees he wants to have the spoon or have it his hand rather than me feed him. Spose I dont really blame him, the only thing he's ever had is medicine that must taste like sh*t or my milk that makes him have pain so kinda wants some control maybe? We're over a week into dairy free and a week of omeprazole. Think it's allowing him to have longer milk feeds without pain sometimes managing 7-8 mins instead of usual 2-3 before pulling off. He's still refluxing and waking up lots at night and now has started to be sick again...He's not done that for weeks confused and ok, so its not proj vom but still strange? He has become really constipated, usually goes at least 5 times a day and not a one since wed afternoon. Anyone know what I can try? Tried some orange juice with boiled water but to no avail. driedaps have huge sympathy to the sleep deprivation I feel like a zombie at the mo. bethylou good luck at paed tom x

narmada Mon 20-Dec-10 11:08:52

It's interesting re the calpol driedaps. Hope it carries on working and you can carry on using it.

Lady, I think even paeds have no idea what it means to have a baby with reflux, in terms of how demanding it is on the parents and how much it upsets the child. TBH, I was so tired at the appointment that I was far less assertive than I would otherwise have been. Also the PND doesn't help on that score. DP is not very vocal or assertive in those situations, so I suspect she also just thought 'mum has PND, making it out to be a bigger problem than it is....'.

Thte tests won't be till January as we are up at my mum's until the 27th and they couldn't fit us in.,

Being here is stressful - all the visitors keep saying 'oh, just put him down, he will go to sleep if he's tired'. No he effing won't. I am not walking around the room with him replacing the dummy endlessly because I want to indulge him, it's because it's the only way to make him sleep and keep him asleep.

Can you tell I am feeling cross today?

narmada Mon 20-Dec-10 12:18:23

lady re the constipation, could you try prune juice, or failing that lactulose? No personal experience but I think that's what other people have tried. Not sure whether lactulose is on prescription or OTC. I seem to remember when we had our failed trial of omeprazole (prob failed because we couldn't actually get it into him and he was on a tiny dose) the GP warned us that constipation was a known side effect. I am really pleased for you that it seems to be making a small difference. What a great christmas present t hat would be if it carried on getting better - maybe it will as any inflammation of the food pipe heals. Fingers crossed for your family.

The wanting to have the spoon is exactly how my DD1 was. I always put it down to what you describe - e.g., wanting control over what goes in her mouth on account of bad associations and also (retrospectively) her very independent personality which has obviously become more noticeable as she's got older.

Also, Lady again, have you got omeprazole as Losec MUPS or as some other formulation? If the former, how do you go about getting it into your DS? guessing in food?

bethylou how did you get on with your paed appointment?

Ladybiskybat Fri 24-Dec-10 04:35:24

Hi ladies well its been a rubbish week for us again. Yes we are on losec mups narmada we mix into apple and feed him that way. Tbh tho have said wouldn't know what to do if we weren't weaning. After thinking there was initial improvement we're now back to square one. I think he is still feeding for a bit longer than normal but He's back to pulling away, arching and yesterday was almost climbing out of his feeding chair as I was tryin to give him butternut squash. He is so very miserable. He is still being sick here and there and I think I keep seeing his shakey thing. 17th jan seems a long way away now. narmada I know what you mean about the visitors and I hope you manage to stay calm with them all. I had a random stranger at MIL yest who when MIL pointed out Ds2 significantly throwing himself back whilst being cuddled said, 'He's just looking at the Xmas lights.' Its so very hard to say anything but all my family know exactly what it's like so the rest can jog on. Am sticking to no dairy religously and not having the suggested blow out over Xmas. Not giving docs any ammunition to explain away lack of progress. Hope you all have a fabulous Xmas xx

narmada Fri 24-Dec-10 17:25:46

gosh, lady were you really posting so early????!

really sorry the Losec has not yet been the magic bullet. You deserve a lucky break.

Best wishes to you and everyone else here on the reflux board. May you all have a non-screamy, non-pukey christmas.

narmada Mon 27-Dec-10 11:19:16

SO how was everyone's christmas??!

Our xmas day was actually ok. Not too screamy, ,presents opened, dinner eaten, etc.

DS has since then stopped sleeping in his swing -basically now nowhere apart from the pram which is not practical in this weather. I have nearly broken a bone about 3 times on the icy pavements waliking around trying to get him to sleep. I am at my wits' end with him and the PND, which just doesn't seem to be shifting.

Someome share their happier christmas tidings??!

Ladybiskybat Tue 28-Dec-10 23:25:52

narmada how are you? Can you go back to gp for review of meds? Reflux is so hard when you are feeling 100% I cant imagine how tough it is when you dont. Our Xmas was ok. Ds1 was so excited this year it made it pretty special. Ds2 right back to where we were pre losec. I am still giving it and we are attempting two and a bit small meals per day but he's definitely not loving the process. He will have some food from spoon but then becomes restless and tries to push up from his chair. Also had a couple of scary choking bits where I could actually see the milk in the back of his throat and tonight he has projectile vom'd it out?! Not done that for about 3 months? On a good note though, we're having lots of smiles from him as he has suddenly gone into that inquisitive phase of awakening to everything in the world. I love it... and both Ds1 and Ds2 worship each other with cuddles and smiles between the tears. Hope things are good for others x

narmada Thu 30-Dec-10 17:47:05

Hi Lady and everyone else. GP has upped my PND meds, my son's got yet another paed review in a couple of week's time - his first set of bloods came back today and (I think) they have ruled out some of the nastier systemic muscular problems. Just waiting on the chromosome analysis which should be done by tuesday next week. The paed also wants to do an MRI of his brain - this came out of the blue yesterday and we were a bit shocked to tell you the honest truth. We have declined until the chromosome analysis is back and still hoping that he has something straightforward that will resolve in time.

lady so sorry the losec not working. What an absolute bummer. But really glad your xmas was OK. And that you are getting some smiles among the tears. Those little glimpses are what make it (almost) bearable, aren't they?

Ladybiskybat Thu 30-Dec-10 22:43:15

Narmada glad gp increased meds and hope PND lifts soon, honestly cant imagine. Having an awful time here Ds2 having very interrupted sleep and waking frequently then arching in sleep. Has refused most feeds all day including his solids. My boobs are going to explode. Managed to get him to have about 5 mins before bed. Can anyone advise on when to seek medical advice with regards to decreased fluid intake? Been told diff things by diff docs and very confused. I am hoping he has some dream feeds tonight. No dairy shmairy!! He's worse not better! Bad times indeed

narmada Fri 31-Dec-10 13:12:52

Oh goodness lady, that sounds awful. Do you think maybe the weaning is making things worse? Just clutching desparately at straws for you.

I really don't know about the decreased fluid thing, I can't offer any advice really - how about calling NHS direct to see what they advise (altho to be honest it always seems to be the same - e.g., go to the out of hours doctor service!). As if you need another medical opinion!

We are really struggling too. You are not alone. I feel like I'm going backward not forward. It's sooo hard when you have another one to look after too. I feel so much for you.

narmada Mon 03-Jan-11 17:19:14

How is everyone? Lady, how is your DS? Did he go back to taking usual fluids?

My DS has over the last 3 days been refusing bottles as the day has worn on. only getting half- to two-thirds of usual quantity into him. He has had a virus involving cough, cold and runny bum, but doc's advice is just keep him at home unless he shows signs of dehydradtion. Very stressful and frustrating. He is impossible to get to sleep, resorted to 2+ hour pram walk this am despite me being knackered. Got the hamster-in-a-wheel feeling again.

MiniMarmite Mon 03-Jan-11 19:33:35

Thanks for starting this thread, I'm wondering if DS2 (7 weeks) is suffering from reflux but difficult to tell, he has had a bad cough/cold since he was 2 weeks old so it is all a bit of a nightmare to be honest). Haven't been to GP about this yet but I think I need to.

DS1 had similar symptoms tbh but I don't think it ever occurred to me - symptoms weren't quite as bad and I had time to stay at home and do all feeds lying down which seemed to improve things. Can't do that this time!

Symptoms:

- crying and arching back during and after feeds
- very fussy about how I am sitting - won't latch on unless it is just right
- projectile vomits entire feed if moved around a lot during or after a feed (e.g. bathtime) but only approx once every couple of days now - maybe because we are keeping him upright for longer now.
- Posseting partially digested milk
- feeding little and often and doesn't stay latched for long(partly put down to having a cold and not able to breath properly)
- sometimes takes ages for wind to come up and won't feed when uncomfortable
- very windy (again maybe due to taking on lots of air as needing to breath through the mouth)
- not sleeping for long between feeds
- wet burps and 'yuk' look on his face
- weight gain from 75th centile to 91st.
- Really fussy about which side he wants to feed from but not always wanting the same side.

MiniMarmite Mon 03-Jan-11 19:35:23

oh, and nappies always wet and dirty - sometimes 3 per feed!

narmada Tue 04-Jan-11 15:25:39

Many of the symptoms you describe are tyipcal of reflux, Mini. Have you been to GP? What did s/he say?

Sorry you're having a hard time

MiniMarmite Tue 04-Jan-11 16:50:46

Thanks Narmada, I seem to be having some luck reducing symptoms by making all feeds split feeds but it is hard to spend any time with DS1 that way sad. I'm going to speak to the HV at clinic tomorrow and see the GP later in the week.

narmada Tue 04-Jan-11 17:07:09

Yes, it is very very hard to find time for other DC when your second one is quite demanding - I know that's ridiculous, all babies are demanding, but some more so than others IYSWIM! We have found the same regarding spending time with DD. She was really bad at playing on her own when her brother arrived, but through necessity is now a little better.

GPs can be a bit ill-informed about reflux - 'if the weight is going on, then all is OK' type of attitude. However, I would see if s/he can do something for you nevertheless if your baby is definitely unsettled by the refluxing episodes.

MiniMarmite Wed 05-Jan-11 14:39:14

Hi Ladies,

I'm back again already! I spoke to the HV about my suspicions abour reflux this morning when having DS2 weighed. She is an HV for whom I normally have a good deal of respect but she basically advised me to stop feeding DS2 so much (he has gone from 50th centile - but 3 weeks early - to the 98th). She suspects (probably correctly) that this is the result of the reflux. I know he is big but this is on the new breastfed baby charts and DS1 was on about the 95th on the old charts (my DH is 6' 5'') so I had just assumed he was catching up with where he would have been if born at 40 weeks. She didn't actually have much to say about easing his pain though!

Having said that, he is feeding frequently and does comfort suck so may be getting more than he needs.

But - looking at Kellymom it advises that frequent and comfort feedings of a reflux baby can help to alleviate symptoms.

And my baby's red book chart says that they do not worry about babies gaining 'excessive' weight in the first year.

So confused (and rambling, sorry). Any experience or advice appreciated!

Ladybiskybat Sun 09-Jan-11 19:01:45

Hi ladies, awful times for us at the mo, DS2 refusing feeds, constipated and my lovely nan died last weekend so not a great start to the year. narmada how are you and DC? Have you had any more tests/results back for DS yet? We went to gp with Ds2 as fluid intake stayed down the next day and...despite a registrar and paed consultant saying so he's still not having it that It's reflux! DS2 is very rattley with his breathing and consultant had picked it up but gp thinks that's the source...apparently blocked airways cause negative pressure inside the chest which draws up the refluxed food. He has given us two inhalers and hopes we'll be investigated for this when we go back. Why cant they say the same thing? <confused> dairy free and losec haven't done anything so Ive decided to do gluten free too so when I go back they dont fob me off for another 4 weeks. Had awful night last night he woke at 11.30 then screamed til after 3 and only settled because I drove him around the city. Thought of you narmada at one point as I was running around the lounge with him and felt very much like said hamster in wheel! mini firstly hello, and sorry you're having a time with LO. You'll soon see from us that the medical profession seem to vary with advice etc. My DS was born on 50th centile and within 2 weeks was on 91st-98th where he stayed til 14ish weeks gaining sometimes a pound a week. I was told by a registrar he was sick (proj vom and some!) because I was feeding him too much and I should stop...pah whatever. He would always feed again after throwing and then keep second one down so if he was full, surely that'd come up too? I found it did help to feed from one boob until empty then swap to the other and also if your let down reflex is fast then it can cause issues so you can let them suck to get milk flowing and then let it drain or express a little before feed. Hope that helps. Really hope for sleep tonight

narmada Mon 10-Jan-11 12:00:07

Oh lady you poor thing and your poor DS2. You must be exhausted. Did you get a better sleep last night. I hope he starts eating again soon. It's terrible when they won't eat, we had a little taste of it recently and to be honest my DS has not really got back into his milk very enthusiastically since then although we are getting it down him. It feels awful, like you can't even nourish your child but of course it's not your fault. You are doing your damndest.

I am so sorry about your nan. You must be really struggling at the moment - well done you for keeping going.

We are going to the consultant tomorrow for DS, I am hoping his chromosome analysis is back in time and we can put that to one side. It is hard not to worry as one of the things they are testing him is a really worst-case-scenario disease. But thankfully rare.

PS my DS also has terribly rattly breathing. My (really good) GP said he thought it was due to aspiration during feeding - and that babies were not very good at coughing so sometimes the bits and bobs they've regurgitated go where they shouldn't. Do you think it could be that?

narmada Tue 11-Jan-11 14:13:08

ok, we now have lansoprazole - seem to remember someone else on here has/ had that too with mixed results to say the least....

Ladybiskybat Tue 11-Jan-11 21:19:54

narmada we had Lansoprazole 10mg. Nightmare to administer but like I said before you have to keep tipping syringe up. Didn't work for us but it works by turning acid pump off in stomach so theoretically there's no acid produced. Ds2 was still the same tho and same for omeprazole which I think is same class. If one more person tells me that he'll grow out of it......angry Also had consultants letter to gp today that says she suspects reflux is result of cow milk protein allergy...well it's 5 weeks with not a sniff of a chocolate, lump of cheese or butter on my toast and hell, im even having rice milk hmm on my porridge. No different and he is still being sick here and there!

narmada Tue 11-Jan-11 21:36:51

lady OH how lovely for you re the letter. I am so sorry - you just want an answer now, don't you? I hope you get one soon.

This lansoprazole is supposed to dissolve, so I am hoping it's easier to get into him than the Losec MUPS with all those little pellets. Omeprazole worked well for DH so I am hoping his offspring is similarly wired.

We had a rotten day today - went to Paed appointment to get results - supposedly- from chromosome analysis only to find they have been delayed. So frustrating as they are testing him for something really awful (spinal muscular atrophy) and we obviously want to know whether he has it

My night off tongight - thank goodness. I look like I've been punched in both eyes due to lack of sleep.

narmada Tue 11-Jan-11 21:37:51

Sorry Lady, I remember now you gave me tips on how to do the omeprazole..... sieve brain.

ellnlol Thu 13-Jan-11 10:07:31

Hi ladies, HNY! I'm a 'dropper-in' to the thread and every time I look I remember why I use it - it normalises what is essentially this weird twilight zone where you do anything and everything you can think of to keep your baby comfortable, and everyone else thinks you're mad!
We started ranitidine at the end of Nov, and the change in dd was awesome - we could actually put her down! But over the next few weeks she deteriorated again and at 6 week review last week we were almost back to where we started.
Paed doubled the dose, and we seem to be on an upswing again, but still troubled by incredibly effortful pooing - she can thrash around for literally hours, followed by a full on purple faced strain, dreadful wet farty noise and pints of curdled yellow goo, so we usually end up in the bath. Sorry to be so graphic. And ok, it's waste so never going to smell good, but absolutely reeks, so that my roughy toughy ex squaddie dh is gagging. Do others have similar? She's still ebf at 23 weeks, HV suggested baby rice but she was much worse - awake every hour and screaming sore again. Think she just can't digest it. Does domperidone address the poo - paed mentioned maybe swapping at next review if no better, but we're reluctant to stop ranitidine as it seems to work, kinda. Sorry I'm doing more taking than giving to this thread - keep thinking we'll come up for air at some point and be in a position to be helpful to others, maybe...

narmada Thu 13-Jan-11 10:26:56

ellnol, I am in no way medically trained but I think reflux is characterised by under-development of the digestive system in general - e.g., the action of the stomach, co-ordination of the intestine, etc etc etc. I think there is a theory that reflux is exacerbated by a failure of the stomach to empty as it should. Domperidone is supposed to speed the passage of milk/ food through the digestive tract I think. Other motility medications are sometimes used I think as well.

Have you done the usual things like excluding dairy from your diet, ellnlol?

PS I know what you mean about coming up for air at some point. I hope it happens soon!

ellnlol Thu 13-Jan-11 10:55:28

Thanks narmada - ok, so I know I said I'd do anything to keep her confortable, but...
I had a go at going dairy free a couple of months ago - only did about 2 weeks and didn't notice any significant changes in dd (someone said it takes a month to kick in?), plus I was so knackered that constantly reading packets, making 'proper' food and trying to make lifestyle changes when I could barely function was sending me even madder, so when the paed said he thought it was an interesting experiment but nothing he'd specifically recommend, I breathed a sigh of relief and went back to dairy - maybe I'm too lazy or just a crap stressed Mum! On HV advice, I've given up orange juice and onions, again to no real effect. Might give dairy free another go though, if I can face it - i'm sure it's not as difficult as I'm making it, and dd sleeps little enough as it is without spending 8 hours thrashing about trying to poo. She goes every 2 or 3 days but then has a good empty out - 2 or 3 dirty nappies in close succession, but never without almost turning herself inside out first!!
I wondered whether to skip baby rice and go straight on to mashed fruit/veggies - instinct says baby rice isn't likely to be easily digested, given that it looks and tastes like glue! Maybe something fibrous (sp?) would transit more easily? But also heard that weaning as late as possible is the way forwards for refluxers, especially as even breast milk seems to defeat her at times? She's a silent refluxer so keeps it down, but still fights with it for ages after feeds! She's 6 months in 3 weeks so we need to make some decisions, I think...

narmada Thu 13-Jan-11 11:16:20

Oh I so sympathise. When I was BF I tried the dairy thing for all of about 2 days and got so fed up - it was impossible to cook family meals that my toddler would also deign to eat.

Hope you find the solution soon.

BaconFlavour Thu 13-Jan-11 11:28:17

Hiya,

Just my experience from very recently weaning refluxy DS - started him on baby rice and purees at 5 months, which he seemed happy with to begin with but then started to get horribly bunged up in his tummy and we were back to the back-arching leg-thrashing hours of screaming, like the early days. Since he turned 6 months I have given up on the spooning and just been giving him finger foods instead (I did BLW with DD a few years back so it's more familiar territory) and he is much happier. I think he was over-feeding on the mush whereas he controls his own intake with things like veg sticks and ricecakes.

I know they're all different and you'll find your own way but HTH!

Ladybiskybat Thu 13-Jan-11 20:09:28

Hi ladies narmada hugs about delayed result it's so hard waiting for something that could be so life changing. We had CF tests on Ds1 and I still remember the wait like yesterday. I hope they come through soon. How are you getting on giving the Lansoprazole? I found it easier as it didnt have to be with apple sauce all of the time! ell baby rice made my Ds2 go mental. Really didn't agree with him and I went for simple veg purees in the end. Its taken about 5 weeks to get to where we are now but he will eat from a spoon without gagging and wretching. He really wants to have his hands in the bowl and wants to feed himself that as soon as I think he wont choke I will give him more finger food. Im dairy and gluten free and im weaning him onto the same free diet. Its soooo unbelievably hard gluten is in EVERYTHING and I could kill for a KFC and bar of dairy milk washed down with a beer but reckon if it makes a difference to Ds then got to be worth it?! I have found that he is a bit more bunged up with solid food and I am trying to get him to drink water at meal times. Going back to paed on monday feels like forever since we were there last time. Got so many questions to ask though will have to write down he is so very rattley and inhalers doing nothing. Also not to be a negative nellie but there are so many people with swine flu around here starting to get very worried about Ds1 and inhalers of course Ds2 if He's going down that road too! Bring on monday and a possible binge on really crap food :-)

narmada Sat 15-Jan-11 17:18:33

Hi Lady, well, the lansoprazole is the same formulation really as MUPS - it's still the little beady things when all said and done. I have been managing to get it down him though. Not noticed a massive difference - although the horrible acid smell on his breath has now completely gone so that is probably evidence it is getting into his system.

I hope you get some joy at the paed's on Monday. Does your DS choke on most foods? I remember my DD coughed and gagged a few times on finger foods but actually did much less of it than with the purees for some reason. YOu are so heroic for continuing with all the food avoidance.

DS is having an MRI brain scan on Mon afternoon so lady I shall think of you when at the hospital. The MRI lady told me to feed and wrap DS before the allotted appointment time, and assured me that 'most' babies lie still and most go to sleep when they dim the lights and turn the scanner on hmm. I cannot see it working with my boy but hey, maybe a miracle will happen!

plasticspoon Sat 15-Jan-11 18:04:29

Hello everyone, can I join? My GP says ds (10 weeks) is just colicky, but we saw a cranial osteopath today who took a proper, detailed history and said she thinks it's silent reflux. I'd be grateful for any suggestions as the sleep deprivation is driving me potty! I was in tears after meeting my NCT group yesterday and seeing/hearing about their happy babies...

DS is ebf and has no set feed times - he is on and off the breast all day with hours of fussing, esp in the evening. Naps are either on me (on the boob) or in the sling (will tolerate my dh for this, than god, so I can send them out for an hour or so to shower/nap). He is miserable a lot of the time and fights sleep so gets overtired most days, leading to an early evening meltdown

Night times are currently our biggest issue - dh is in the spare room and I am co-sleeping with ds to get any sleep. He will not sleep in the cot at all - wakes immediately he is placed down and skips straight past grizzling to immediate hysterical screaming. At night he thrashes round for hours, especially after feeds. I just don't know what to do - how can I help him sleep?! Can't use a cot wedge as that needs a cot!

Does anyone have any ideas? We are all miserable and I spend nearly as much time crying as ds at the moment...

NoTeaForMe Sat 15-Jan-11 18:11:21

Hello,

I hope you don't mind me joining you but I'm wondering if you can help me and let me know what you think of
y daughter.

She is 12 weeks old, so not sure why things have suddenly changed-we're now questioning everything! I mix feed her, she has two bottles of formula a day and the rest I breastfeed. Recently she has become very fussy especially on the bottle at bed time. We thought it was due to needing to move teat size but although she took the variflow teat (tommee tippee) a couple of days ago really well we were back to the same problem that night. She thrashes about and goes like a rod of iron, throwing her head back and arching her back-she then had a hell of lot of wind, more than she's ever had! We have tried me breastfeeding instead or putingt the old teat on and she was ok ish in the end. She is also then waking up every couple of hours and feeding through the night. She is also occasionally waking up screaming, or crying in her sleep (mainly this is in the day) which is very upsetting for us both!! She is much better at feeding through the night and in the day though is still a bit unsettled. I have wondered if she is not getting enough milk from me but as she is doing it on the bottle more I just don't know. We have now bought the medium flow teats as she is a very strong sucker so was taking in far too much on the variflow and we felt was getting frustrated on the slow flow.

She seems to be in pain when feeding but then happy enough the rest of the time......on saying that it's really affecting her sleep now and she seems to be a baby who needs her sleep. She's waking up a few times in the night and it's a real battle to get her to sleep in the day.

I have the baby clinic on Monday to see the health visitor and get her weighed (she has been steadily putting on weight since birth) so I will mention it to her then. Is it worth going to see the dr?

Any advice is GREATLY appreciated!

BaconFlavour Sat 15-Jan-11 20:32:17

Hi Plastic Spoon, that does sound refluxy - it is all very familiar, the pained screaming and thrashing sad. If it was me I would go back to the GP and demand to try Gaviscon at the very least (needs syringing in after every feed for a bf baby). Getting the right meds has made such a huge difference for us - Gaviscon and now ranitidine - out of the woods of sleep deprivation and everything else gets easier. There is hope!

NoTea, I hope the HV says something useful... not sure from the sound of it whether you are dealing with reflux there or colic... have you tried Dentinox or something like that for the windiness?

NoTeaForMe Sat 15-Jan-11 22:07:50

Baconflavour can I ask why you think it sounds colicky? Is it because of the time of day it is happening? Does anyone have any good remedies I can try? She is burping ok, with the aid of Infacol but still seems in terrible pain and is refusing to go back on the bottle, or clamps and yanks on and off the breast (ouch!!) Its really getting upsetting to see her in so much pain, and other than this I think she'd be such a happy baby! (if she'd only stop waking up in the night!!)
Anyone? I know this thread is about reflux so sorry if I'm hi-jacking a bit!!)

Thanks

BaconFlavour Sun 16-Jan-11 08:02:41

Just because of the wind I guess... I am no expert at all - but extra night wakings might just be growth-spurt hunger, you might find this settles down again in a few more days (fingers crossed!).

narmada Sun 16-Jan-11 12:36:26

gosh notea, it could be reflux, or any number of other things, or nothing - maybe a chat with the GP - or perhaps a BF counsellor - would be helpful.

Have you ruled out oral thrush? that can sometimes cause fussiness. Could she be teething? that can sometimes cause them to clamp down on things.

The variflow teats I find cause DS to swallow much too much air. Even rotated to the slowest opening he just gulps it down.

narmada Mon 17-Jan-11 17:08:05

lady how did it go at the paed's? as i suspected DS's MRI wasn't a roaring success...cried and shuffled all the way through it. unsurprisingly.

Ladybiskybat Mon 17-Jan-11 23:43:32

plastic hugs to you its awful when you hear of other bouncing babies smiling away. I had a friend say to me the other day you've had a rotten time of mat leave haven't you? To which I think yes I bloomin well have but nice when someone else notices and you're not going as crazy as you think. Have you seen the AR pillow (i think if you search for that it comes up) could be ok? It has like a little strap to keep them in so could imagine that it would work on a bed or cot? notea sounds like reflux to me. I think the bottles are probably not helping with the wind situation but you've already acknowledged that. I think refluxy babies can be very windy. What's you hv said? narmada did think of you today. Poor little man. What did they do with him? You had chromosome results back yet? Our appointment ok. The consultant is lovely. Weight gain is about 11oz in 6 weeks but as I said to her he isn't pooing so I believe weight gain is less. Its reduced me to tears today as He's been really, really sobbing and getting hysterical trying to go. Ended up at gp and got script for Lactulose. Has done some very hard pellets tonight but again in agony. Dietician doesn't think He's got cow milk protein allergy or gluten so we're both back onto normal diet Yay! They said, He's putting weight on blah blah blah dont worry blah blah we've had women in with unconsolable crying babies yours is fine. Made me feel a bit of a fraud tbh. Anyway, they asked about sick and if it was just milk or solids in sick too. Well is WAS all milk until today. He has thrown up lots today and tonight twice that was proj vom felt like id gone back 3 months! Anyone know if constipation could have caused it?...Really hope we're not going backwards. Review in 3 weeks though.

fiveisanawfullybignumber Tue 18-Jan-11 09:34:15

Lady DD is intollerant to dairy soy wheat gluten etc, my pead seemed a bit sceptical but dietician a lot more understanding.
Dairy soy makes her proj vom, and very often. Wheat gluten has a totally different effect, she's all cramped up, farting like a trooper, but in agony. Screaming in pain with her tummy.
Sounds like lactulose isn't doing enough, try asking for some movicol.
9m old here and she still only sleeps either in my arms or finally for a 5-7hr stretchin her ARpillow at night.

Ladybiskybat Wed 19-Jan-11 01:31:42

I have come to the conclusion that no one can do anything to help. Crap crap crap crap crap. Been to out of hours as another day with hit and miss proj vom also 4 hours screaming this evening which is unusual for DS. They say no infection anywhere, just reflux keep an eye on him. I just want a magic cure now! Felt like such a fraud yesterday and now this. Little darling children never do it when you need someone else to see so they know it's not just you

fiveisanawfullybignumber Wed 19-Jan-11 08:24:35

Maybe keep on excluding either dairy or wheat, and see if they have any effect. When I try anything, her symptoms come back with a vengance.
I know it's not allowed here, but (((hugs))).
How old is he? DD is 9m now and things are a bit easier, we still have some awfull days, but the good outnumber the bad now.

FimbleFumbleFamble Wed 19-Jan-11 08:56:18

<waves>

I so wish I had found this thread last August.

DD is now 8 months, still vomiting, only difference is that its now, with weaning, multi coloured.

We seem to have the pain under control thankfully and have the resulting sleep issues 'managed' as well. Can finally get the daytime naps done as long as she is in the sling, or semi propped in the buggy.

But it was so awful for a long time so I really do feel for those of you still going through it. I used to get so upset at weigh-ins where the only baby in the room screaming was mine, and all the others (it seemed) were gurgling and lying on the mat smiling. Or happily sleeping in the pram. And the useless useless advice HV's gave (eg at 12 weeks, oh some babies just dont need as much sleep when DD NEVER slept in the day; or a hmm look at me when I told them she would scream for 11 hours a day often)

Luckily I have found one very helpful, knowledgeable GP at our surgery, unfortunately the rest not so and the only time I saw one, even though we had been seen and diagnosed by the paeds sent us packing with a 'shes not actually losing weight, come back when she is'. I almost threatened a sit in in the surgery with her screaming allday until he took me seriously

I happened to get talking to a lady one day recently who worked for one of the best reflux consultants in the area. Her advice on weaning was to take it very slowly. I'm passing this on as it was some of the best advice I've been given. Having noticed DD had awful trouble with wind, cramps and vomiting after banana and apple I took her (privately) for intolerance testing to discover a further 12 intolerances. Wish wish I had known that sooner, one was wheat and lets just say I do love a good bit of toast!

Will read all the thread later and see if I have anything helpful to add.

narmada Wed 19-Jan-11 22:06:08

Oh Lady, I am so sorry you are having such a hard time. Is it possible for you to see a private paed? I know it's not an option nor necessarily any better than NHS but hey, you never know, a different opinion may be just what's needed.

I know what you mean about the miracle cure.

For some reason, the lansoprazole has not neutralised DS's sick - it still smells like horrible acidy sick. I think the problem is that I can't get it into him on an empty stomach. Mornings are a no go as he is screaming for a feed and cannot wait the required 30 minutes after taking the meds to feed; I try and give it 2+hours after a feed, but I know for a fact his stomach is not empty at that point either because he frequently regurgitates curdy solids. arrrghhh!

narmada Thu 20-Jan-11 10:53:36

Yay! DS results for spinal muscular atrophy came back clear. massive relief all round.

ellnlol Thu 20-Jan-11 11:52:30

Yay... Congrats to you Narmada. Thank you for sharing your fantastic news! Made my day...
We're still two steps forwards one (or three) back! Ditched the rice idea and just going for mashed veggies which she seems to like but still struggles to 'process'. Just had massive straining episode followed by poo that was (I swear) just mashed carrots! I know it's supposed to turn the poo orange, but surely it's not supposed to come out(3 days later) looking exactly the same as when it went in?? Maybe things will be better in a few more days.
Still massively sleep deprived, so know how it feels for others - dd naps once or twice a day for 20-40 mins, on me or in the buggy, never still. And wakes every 50-90 mins through the night and we can only get her back to sleep by feeding. Sooooo sick of people saying things like 'have you tried putting her down?', or 'could you leave her to self soothe?' yeah right!!
On a different note - we tried a swing but dd hated it, so it's up for grabs. Been used literally half a dozen times for minutes (if not seconds!) It's not a flashy one (think it was 30 quid - didn't want to spend loads if it wasn't going to work!) If anyone can use it, we need the room!

ellnlol Thu 20-Jan-11 12:26:11

Also to Plastic... Forgot to say that I came back from my first 'support' group in tears after all the other babies had laid on the floor smiling and gurgling, or sleeping, and some smug cow proud new mum had told me that her baby never cried because she could meet all his needs. I can laugh now, but oh boy she hurt my feelings. Personally I think we're meeting needs she can't even imagine, for 20hrs a day then getting up having had no sleep and listening to our dlos turn themselves inside out again. God, we're brilliant!! Off for a screamy walk now cos the sun's shining and most folks in our neighbourhood are getting used to us by now!! Hang in there - apparently it gets better grin

FimbleFumbleFamble Thu 20-Jan-11 20:48:38

Have read some of the thread

Lady, I hope I'm right in thinking you are starting weaning and are having trouble with constipation?

DD has the same problems. I read somewhere that babies with the opposite problem of diorrhea should be treated with the BRAT foods. That is:Banana
Rice
Apple
Toast

Funny how thats not well known as most baby weaning foods contain at least one of most of them!

On another note I was talking to my Chiropractor about the problem and she does nutritional testing. Was expensive ut it turns out DD has 14 food intolerances including, as I suspected banana, apple, wheat, broccoli, tomato.

Food for thought smile at least...

narmada Sun 23-Jan-11 15:30:52

Ellnlol - thanks, it was a huge relief about the SMA.

I really know what you mean about the 'have you just tried....' thing, I know people are trying to be helpful but it so isn't. As if you would be going to such lengths to get them to sleep if you didn't have to. I also have had several experiences when at playgroups and similar, looking at these babies just dozing away and wondering why mine can't be like that - so frustrating, even tho we love 'em.

Re the woman who told you she could meet all her child's needs - oh my good grief, how did you not manage to tell her to shut up? What a ridiculous thing to say. No doubt she just has an easy baby. But hey ho, that baby mightn't turn out to be such an easy toddler or teen. So there!

Bananas always bunged my DD up when she was first being weaned, for what it's worth. This was especially true the less ripe they were.

Ladybiskybat Sun 23-Jan-11 22:49:43

Hi ladies thanks for all of your weaning advice. The lactulose finally worked and DS finally seems much better and more regularly! The sickness has subsided but we're still having more miserable days than happy ones. He seems so very grumpy and is waking quite a lot more than he used to. Well, I guess they dont say the reflux rollercoaster for nothing eh? narmada yay for you re SMA results you must feel very relieved. Hope you are all having a good weekend?

narmada Tue 01-Feb-11 12:41:23

How's everyone gettimg on? hoping that silent equals good!

DS is getting worse on the reflux front, which makes sense as he has now upped his milk intake. i am grateful he is eating but i wish this bloody condition would bugger off.

Ladybiskybat Thu 03-Feb-11 23:07:55

narmada poor you with your Ds. It really is a pain in the ass isn't it? We've had a miserable week too. Lots more smiles but still arching and refusing milk. He has started gaining weight steadily again so hoping that it continues. Have had to revisit gp about Ds chest and I shall quote 'his chest sounds like a loft full of pigeons'. Hmmm so very rattley and now on steroidal inhaler in addition to the other 2. Hope that they do something poor little man is wheezing like an old 60 a day chappy! Are you seeing the consultant again narmada?

narmada Fri 04-Feb-11 19:39:32

oh lady, i reckon your DS and you are going to get your lucky break soooooooooooooooon. sorry you are having a hard time still.

DS as of weds being transitioned to neocate due to suspected milk intolerance, on advice of consultant - hpoing it's got something to do with it but digetive system/ muscles prob playing a major part too as he has also been dignosed with transient infantile hypotonia eg - poor generalised muscle tone.

He has started refusing some feeds too, not by arching but by crunching himself up into a ball and rotating his head. It's very unnerving. nothing to d with the neocate as it started on the usual formula. Joys....

ellnlol Mon 07-Feb-11 17:38:26

To any post weaners out there...? We're on our third attempt and dd can tolerate mashed veggies. That's it. Fruit's a non-starter and the grains seem to be out too. But the bit I'm struggling with is that she seems fine with breakfast and lunch but if we feed her after about 2pm we're all up all night. Even more than usual, with her moaning and groaning, thrashing about and arching and her new trick - banging her head. Anyone else gone through that and what did you do? It's hard enough to keep her comfortable without aggravating things! Thanks.

ledkr Thu 10-Feb-11 23:24:41

hello,im a newby.dd 14 days old has been diagnosed with reflux by the hospital after being re admitted with aspiration pneumonia.She also has a cleft soft palate so Drs are unsure as to whether reflux or cleft caused the aspiration or possibly both She is on gaviscon (in feed) dom peridone and ranatadine.She has lost all the symptoms of the reflux now but is constipated maybe due to gaviscon.Has not gained weight since post birth loss and i am having to wake her 3 hrly then keep her up right after so getting no sleep and worrying re another aspiration.
What are the alternatives to gaviscon and who would i speak to about it,gp?
Happy to find this thread tho.

ledkr Fri 11-Feb-11 12:50:02

gentle bump

narmada Fri 11-Feb-11 16:37:45

Gaviscon is infamous for causing constipation. You could speak to the GP about trying carobel instant insead, which i have found mildly less constipating although the poo even on this seems harder to expel and is much more formed.

I am really aghast that it appears you've just been sent on your way.I think the GP can prescribe carobel but are they referring you to any sort of feeding specialist or paedeatrician??

narmada Fri 11-Feb-11 16:43:11

ledkr welcome! sorry, I didn't say that in previous post. Trying to concentrate on jiggling my own refluxy babe to keep him asleep.

ledkr Fri 11-Feb-11 18:25:00

saw mw for last appointment today and she rang gp and said that we need some guidance and support and he aggreed,he has also referred us to a paedeatrician.She is already under the cleft palate team.
She isnt gaining weight atm,we are waking her 3 hrly to feed her but she is still very sleepy so quite hard,i feel a little pressure,its very hard to deal with so many different issues with the threat of a further aspiration looming.She hates the ranitadine,it tastes horrible,i wonder if she needs all 3 meds but at least i can ask drs now.

narmada Fri 11-Feb-11 19:31:09

gosh ledkr I am so cross on your behalf that you've not had proper, co-ordinated help so far. Glad you've now got a referral in the pipeline - I do hope they have got you down as urgent. Are you breastfeeding or bottle-feeding? If the former, let me know where in the country you are and I will look up lactation consultants in your area if you think it might be helpful. They are really well-versed in feeding issues and should be of some help, perhaps while you wait for the other appointments to come through.

I am not surprised you feel pressured - anyone would in your situation. Ranitidine does indeed taste horrible - what baby would like peppermint, for crying out loud?!- and as far as I know it doesn't come in an unflavoured version for pediatric use. Have you tried syringing it right into her cheek as opposed to spooning it into her mouth? You are probably doing that already... but if not it may make the whole experience a bit less stressful.

There are more effective medications than ranitidine that can be prescribed in the long run, and IME they don't taste as bad (e.g., lansoprazole comes in strawberry flavour). However, their side-effect profile is a bit worse than ranitidine and I don't know how often they are prescribed for neonates as young as your baby. Certainly mine was prescribed this more powerful class of drug at around 4 weeks of age. I have no medical training I should make clear, just speaking as one parent to another. I know it is horrible giving babies medication.

Hang on in there, hopefully your issues will be sorted with some co-ordinated help.

FeelingHip Sun 13-Feb-11 10:09:41

Hello, started to read the thread but felt completely overwhelmed, so apologies if I ask questions that have been answered elsewhere...went to see GP on Friday because I thought LO might have reflux. He sent us straight to A&E because I mentioned that LO (4 wks old) is gagging slightly / trying to clear throat in the night, before swallowing. A&E prescribed infant gaviscon and told us to feed 90 mls every 3 hours or so (but on demand), where previously baby had been having 90-130 mls. She also suggested 60 mls every two hours, but when we tried that yesterday baby just cried with hunger until we gave him the 30 extra mls. He seems to be getting worse and last night didn't sleep at all. He is not really being sick that often (only every few days, nothing unusual at all) but it's the gagging and discomfort. He is gaining weight well at the moment too because he is continuing to feed. But how do we survive this? We were up all last night with him, but tomorrow my husband goes back to work so he won't be able to spend hours awake. We are mixing one sachet gaviscon with 100mls of feed for a 10lb baby, does that sound about right? Sorry for all the questions, but they just diagnose you at hospital and send you away without any support at all. We tried keeping him upright after feeds (he is FF) and winding regularly, nothing seems to help (or maybe it is and things could be a lot worse). He is also now constipated (probably from the gaviscon?). Please help!

narmada Sun 13-Feb-11 16:31:22

feelinghip poor you and poor DS. But welcome!

Re feeding smaller volumes more frequently, I have found it makes not a jot of difference, but others have different opinions. Positioning makes absolutely no difference to our son either. He won't even sleep on his tummy, which is what many reflux babies prefer.

IME gaviscon is both constipating and totally useless as a means of addressing reflux. Again, others have found otherwise but that's my experience, and I don't think it's that uncommon. If he really is in discomfort and sleeping very poorly, he may need something else. I would press for a referral to someone who really knows their stuff on digestive issues in babies. It could be reflux, and/ or cow's milk protein intolerance (relatively common and often co-existing with reflux) or it could be something else entirely, or nothing at all! The GP should do you a referral. DOn't let them fob you off with the old 'well, he's putting on weight' line.

narmada Sun 13-Feb-11 16:51:18

Actually i could do with some advice myself re lansoprazole. Is anyone's baby on a higher dose than 1mg/ kg?

ledkr Sun 13-Feb-11 19:35:40

feeling sympathies here,i am very new to this and also dealing with dd having cleft too,am trying to remain relaxed at the mo,gp has referred us to paeds and my dd is on other meds as well as gaviscon,she is a bit constipated as in strains a lot to go and only once a day,busy now will catch up tomorrow,get gp to refer onwards.

cardamomginger Sun 13-Feb-11 19:36:36

my baby was put on 15mg lansoprazole per day at the age of about 6 weeks. can't remember what she weighed, but she certainly wasn't 15 kilos! the paediatrician said that this is a perfectly acceptable dose (since confirmed by consultant at great ormand street) for a young baby, but he did have to ring the gp when i asked for a repeat prescription. he also said that you're never going to get all 15 mg in a baby once you've ground up the tablet, mixed it with water, stuck it in a syringe and then tried to squirt in their moth and get them to swallow (and not vomit it back up). dd had a severe inflammatory allergic reaction to cows' milk that took about 10 weeks to get rid of entirely. we are now phasing lansoprazole out, but at 7.5 mg per day she's still on more than img per kilo. really feel for you re the neocate - we started at 7 weeks when her taste buds were very naive and now at 20 weeks she doesn't know any different. will be "interesting" to see if she starts throwing a strop when we wean her and she realises that there are far better tastes out there!

bethylou Sun 13-Feb-11 20:46:11

We were on 15mg when DS2 was 10kg but the registrar got twitchy so we've decreased it a little and actually, for us it's been okay, although DS2 will be 1 tomorrow and his symptoms are much improved. It took 10months and we still carry a muslin, but we are getting there.
FeelingHip our DS1 had silent reflux and used to choke twice at least every night for about 5 months which scared the crap out of us. We were put on ranitidine in the end and that sorted DS1 out. DS2 started the choking from about 8 hours' old and was on all the meds by 14 days as my GP knew I was a bit of an expert by then unfortunatly, after DS1! Gaviscon made both boys constipated. I would say learn as much as you have the energy for and then be clear about what you want form your GP and keep going back (with a partner in tow so they know you are not being a fussy mother, as happened to me with a consultant) until you get what your LO needs. Good luck. My carpet is wrecked, but the nightmare first 9 months is thankfully behind us and we are coming through it stronger for all our trials (and will not be risking a third refluxy baby!!)

ledkr Sun 13-Feb-11 21:31:39

dd was choking badly from birth too,then developed an aspiration pneumonia at 6 days,it was a nightmare,she has a cleft palate too so drs dont know what caused the ap but maybe both,does anyone else lie baby on their side and/or keep them upright after a feed,i find that hard at night,i watch tv!

narmada Mon 14-Feb-11 10:25:34

cardamamginger thanks for your posts - reason I am asking is because the only time DS seems comfortable enough to sleep for longish stretches is, I've realised, when he has inadvertantly had two doses quite close together...

not getting on too well with the neocate - seem to be stuck at a half and half mixture of aptamil/ neocate, any more potent and he won't touch it, particularly first thing in the morning . have even tried sweetening and flavouring so i don't know what we're going to do. every evening is spent jiggling him and trying to keep him asleep, and he still at 18 weeks has to be held/ jiggled for all day sleep. I am going crazy and my poor, poor DD1 is constantly clamouring for attention.

ledkr, have you considered buying an under-mattress sensor breathing pad? we have one and it makes me sleep a bit easier.

narmada Mon 14-Feb-11 10:26:04

bethyloy thanks too and glad your LO is doing so well.

MsScarlett Mon 14-Feb-11 14:57:36

DD has just been diagnosed at doc's today She has all symptoms mentioned here, including white tongue and hoarse voice etc. She also has explosive and green poos and farts all the time. In a way I'm glad I know now, cos I just thought it was all normal newborn stuff and that I was just a weak individual and a bad mum for not being able to cope with the no sleeping, constant crying and feeding!

Can you guys advise me on how you feed your dcs? I am ebf, dd is 6 weeks would rarely last 3 hours between feeds, usually 1-2 hours at the most. Before it dawned on me that she might has reflux I was trying to stretch out the time bewteen feeds in the hope that she take bigger feeds and sleep for longer at night etc and I thought this may correct green poo issue as she would be draining breast and getting enough hindmilk etc. Now obviously I realise this probably isn't best thing to do. Do you stick to a feeding "routine" at all, or do you purely demand- feed? Thing is dd seems to have stopped demanding food! Today she has hardly fed at all and seems happy, every now and then I put her to the breast but she has a small amount and starts screaming! I reasoned that stretching her out between feeds was that she was gaining massive amounts of weight (15oz a week) but now I realise that was proabaly down to clusterfeeding/comfort sucking. Advice anyone?

I have found that gripe water worked really well, I gave it to her when I thought she had colic, infacol didn't work but gripe water instantly stopped her crying. Probably because it has an antacid - another clue that her symptoms were down to reflux rather than colic. Thing is I noticed she developed a rash when I started using it that went down when I stopped so I stopped using it! I have now found that infant gaviscon works just as well!

Funnily enough she doesn't like her swing much, but is instantly soothed when put in her vibrating bouncing chair. I have also put a folded blanket under the head end of the mattress in her moses basket to elevate it. Before, the second you laid her down in it she would scream and wouldn't settle at all. Now she settles straight away, but admittedly still only sleeps for about an hour at a time, but I think that is down to habit and she is waking for comfort/food rather than due to reflux symptoms.

Has anyone tried and elimination diet to indentify potential triggers? Is it worth doing?

narmada Mon 14-Feb-11 17:04:59

Ms scarlet, welcome! Have you seen a lactation consultant about your DD's issues? I am wondering if there might be an oversupply issue contributing to her problems, that's all. I think the green poo could be an indicator. But it's great the gaviscon is working well. hurra!

ellnlol Mon 14-Feb-11 17:28:41

Hi MsScarlett
Welcome...
Your DD sounds similar to mine, perhaps - hated her swing, exploding poos, constant (often 'angry') feeding, unable to stay asleep despite settling well. I have also been through the 'am I a crap Mum, what am I doing wrong' stuff because I couldn't keep her comfortable and happy and hated that she cried so much. She's now 6mo, so here are some thoughts, for what it's worth...
I nearly drove myself (and DH & DD) absolutely mad by trying to get a routine, before binning it and doing whatever felt right on the day, and each day was, and still is, different. I'm not saying it's the best thing, but it's the only way I can cope! DD is BF from the boob - she refused all bottles, even expressed. I demand fed, and still do even though we're trying to wean. She also used to have days when she didn't want much and days when she fed frantically and almost constantly - I literally walked round with her in a sling 'plugged in' for hours at times! She prefers to sleep on a shoulder, but will now sometimes sleep on her side or front (which scares us but we're human and need to put her down sometimes!)for around 60-90 mins at a time. Some nights DH & I take it in shifts to hold her so she can get some asleep. Her cot end is propped up and she feeds to sleep as she still can't self soothe. Her reflux is silent so it's sometimes hard to work out what's symptomatic and what's behavioural. But just when I think it's behavioural, she 'gloops', chokes and wails, or strains to poo for hours on end, so I decide she was too sore to sleep.
Altering my diet didn't make any difference, and I found it very difficult, but others swear by it.
If I'm in a position to give advice, it's - do whatever you have to to keep your LO happy and comfy, forget the 'rules'. Stick to your guns with professionals and'know all' other Mums/relatives - she's yours and you know what you're talking about. Go easy on yourself - there's plenty of time to be supermum later on - just now you're dealing with a refluxy baby and it's hard. Accept help and keep in touch with people.
Sorry for banging on!

MsScarlett Mon 14-Feb-11 19:32:25

Thanks you two! Glad to finally have some indicator that perhaps it is harder for me than others! I knew being a mum was going to be hard but nothing prepared me for this! I thought the reason I wasn't coping was that I was inherently less selfless than other mothers who are just better at "sucking it up" than I am! I hadn't sought any extra help/advice from hv/clinic because I thought they'd just tell me it was "normal" and I knew she was gaining weight because you could see it visibly - plus she is such a handful I struggle to get out and do anything when dp is at work, I barely manage to get dressed/showered most days - so I didn't see any point in going to clinic as I didn't think they could help. It was actually this thread that convinced me she had reflux! So, I took her to GP today and I'm also going to go to clinic tomorrow, get her weighed and have a chat with someone. I feel so much better now I know she's not just "difficult" and I'm not just crap!

Narmada - how could I access a lactation consultant?

Ellnol - please bang on all you like, yes your lo does sound similar. Mine's favourite sleeping position is on her tummy on my chest and I have woken up in this position a few times after I just can't stay awake feeding her! I am so exhausted I just can't help it...

Can anyone advise on breastfeeding and giving gaviscon? How do you get them to actually swallow it?! I use a syringe and give her small bits slowly into her cheek but it just comes back out again if her head is tilted forward, and if her head is tilted back she seems to choke on it which is also worrying. Also, as you can only give 6 sachets in 24 hours, how do you decide which feeds? DD has lots of little feeds, and seems to be in pain after/during all of them...

Looks like its' me banging on this time...

narmada Mon 14-Feb-11 19:44:45

There may be one that works on the NHS in your area. The LCGB website should have details of one near you:

http://www.lcgb.org/consultants_local.html

Some practice privately and charge - I paid about £70 for a 2 hour consultation.

MsScarlett Mon 14-Feb-11 19:51:56

Hmm - only one anywhere near me is private, and just can't afford it unfortunately!

narmada Mon 14-Feb-11 19:51:57

PS re gaviscon, you can give it in a bottle mixed with a bit of cooled boiled water but that is a faff.

Could you syringe a bit in, pop her back on boob to initiate suck/swallow and repeat until it's all gone down?

narmada Mon 14-Feb-11 19:53:19

Oh bugger. You could try calling one of the BF support lines, NCT one maybe?

cardamomginger Mon 14-Feb-11 22:58:04

so sorry narmada you and DS are having a truly horrid time sad. don't know what to suggest re the neocate. nutramigen, even though it's derived from milk, would doubtless be better than 50/50 aptamil and neocate. has he tried nutramigen? but i think that's pretty vile stuff as well. don't know what to suggest. how much lansoprazole is DS prescribed? who have you been seeing? GP or paediatrician? i think GPs and even non-specialist paediatricians can be a bit wary of prescribing medication at a high enough dose to actually make a difference to the problem. if you are being managed by GP can you press for referral to paediatrician? and if you are seeing a general paediatrician can you press for a referral to a specialist? sorry if you have already said all this in another post. where in the country are you? we are seeing someone fab at great ormond street. but it does involve neocate - not sure you are going to get round that. so sorry sad

ellnlol Tue 15-Feb-11 09:48:45

Oh gosh MsScarlett - know what you mean about 'is she just difficult, (and if so, why?) or 'normal' and I'm just not up to it'... Been there! People had to remind me that they use sleep deprivation as a form of torture because it's so soul destroying! It's ok to be knackered, or stressed, or to hate the situation you're in. You're not being unselfless (is that even a word?!)
I hated 'groups' because of the monumental effort it took to get out, and when we got there everyone else had smily, gurggly, contented babies and mine couldn't be put down and screamed anyway. I felt like such a freak. Good on you for going to clinic, I hope the HV is good for you.
Re Gaviscon - I got into such a tizzy about timings. If it was less than 4hrs was I overdosing her, more than 4hrs and it buggered the next dose up!! And the whole 'with a feed' thing - implies there's a feeding routine and the doc who prescribed it should know that doesn't work! We syringed, ever so slowly, into her cheek on the 'down' side as she lay on her side, if that makes sense? Some dribbled out but more stayed in! Someone suggested mixing with expressed milk and syringing in, but that didn't work for us - even more liquid to get in and the feeding's hard enough without trying to express too! That said, we felt it didn't make a huge difference to her and made her chronically constipated, so switched to ranitidine quite quickly. We had to change GPs though - the old one wouldn't prescribe ranitidine and suggested we sing to her if she's 'fussy'!! Hope you have more luck with the Gaviscon today. Keep in touch.

narmada Tue 15-Feb-11 10:19:39

DS is on 6 mg lansoprazole, prescribed by hospital paed. He weighs around 7 kg I think. Paed's not a gastro specialist but is very very good and think I will email him for advice. We are in Kingston, Surrey.

The main problem is sleeping really - I don't know how much of it is behavioural and how much of it is due to the reflux/ CMPI and learned behaviours.... it is so hard to decipher. I think DS has a high pain threshold as he has had blood taken via a cannula from the back of his hands twice and barely made a peep, just looked agitated.

I got hardcore with his sister (who was also a terrible sleeper) but with him I just can't be confident that it's not the reflux/CMP thing that's making him unsettled...

narmada Tue 15-Feb-11 10:20:28

cardamomginger sorry, I didn't say - thanks for taking the time to reply.

cardamomginger Tue 15-Feb-11 13:07:45

narmada - i think you may need a paed gastro specialist. if ds needs lansoprazole 6mg is prob going to do bugger all good - particularly as you can never get all of it into them. if you want i will pm you with our consultant's details at great ormond street. xx

narmada Tue 15-Feb-11 13:48:59

cardamom yes please! We have been referred to GOSH but it's to a neuro, as DS also has hypotonia of unkown cause...

Thanks re lansoprazole advice - tis true about it not all going in and I know it's never given on a truly empty tummy because he frequently sicks up solidy curds and even pure liquid even 3 hours after a feed!

cardamomginger Tue 15-Feb-11 14:14:16

narmada - done! X

Fumblina Tue 15-Feb-11 14:29:29

Just popping to to lurk/post and see how you are all getting on.

narmada There is a fab gastro paed at Kingston hospital. A couple of people I know have been referred and he comes with glowing reports. He can be referred to by your GP as he runs the reflux clinic at Kingston Hospital BUT he also has a private practice. His name is Dr Winrow

So to speed everything up, my sister got the referral from her GP, paid for the first private appointment so she didn't have to wait the 6-8 weeks for the referral appointment. Then was 'in the system' already when the NHS referral did kick in.

And yes, terrible sleeping and reflux do tend to go and in hand. (sorry if thats slightly depressing news!)

narmada Tue 15-Feb-11 14:57:15

fumblina thanks for the tip - Wwe have the lovely Dr Lindo who has been brilliant so I am kind of loath to change him as it seems a bit rude somehow I know I shouldn't be so meek!

Yep, sleeping, oh yes, he is my second refluxy one, although DD was nowhere near as bad as he is. Her sleep was possibly worse however...

cardamom have replied via PM - ta so much.

narmada Tue 15-Feb-11 15:38:09

Well blow me down with a feather. I just left DS propped on his side on our bed, dummy plugged in, and he has sent himself off to sleep. This has (whisper it) never ever happened before. And I mean NEVER. Blimey.

MsScarlett Tue 15-Feb-11 16:25:19

Ok - so I am officially a bad/neurotic/not coping mother now, it will now be embalzoned all over the HV's notes...

Took dd for her hip scan (she was breech). I had fed her not long before we left as I knew we'd be out for a while, but inevitably she started screaming. I gave her some gaviscon and luckily she setlled and I managed to get her to the hospital without any problems. Got called in and I warned them that ahe doesn't like being laid down and why. Funnily enough she was ok when they scanned the first one, she was laid on her side and I thought maybe she'd actually be ok... Rolled her onto her other side and she started SCREAMING and kicking her legs all over the place. It wasn't that that bothered me so much, I am used to her screams after all, but the two women scanning her looked HORRIFIED.

So anyway, I get her into her clothes and into the car and she screamed in the car the whole way to the clinic. Usually she is not too bad in the car so by the time I got there my nerves were frazzled. She wouldn't stop crying when I got her out so I wheeled her round outside in the pram for a while to get her settled. I go into the clinic and am greeted by the sight f lots of happy gurgling babies lying on changing mats. My heart sank. A man told me to undress dd and lay her on a mat. My heart sank some more. Of course the moment I laid her down she started. Bearing in mind the only reason I was there is that I wanted a chat and some advice regarding the reflux, and I called the HVs twice and their answer was "take her to clinic". So i said to the man, I don't want to undress her right now as she is distressed afetr just having scan etc but I have a couple of questions etc. So I waited outside in the porch bit and tried to sooth dd. HV comes out and we start to chat. What do I do? I start CRYING! Only for a second, I composed myself quite quickly, but she took one look at me and said I really needed someone to come and see me at home as I needed some TLC. Which roughly translates as "your dd is now on the at risk register" I suppose!

She then went on to say that I had come to the wrong clinic (I was told on the phone to go to that one) so she couldn't help me as I was not "hers". She also commented on dd's white tongue and said it must be thrush (?) and as it turns out she also has a tongue tie, god knows why noone else has noticed as she constantly has her mouth wide open screaming..

We finally weighed her while evryone else in that small echoey room put their earplugs in, and she is gainig weight - 50th centile, so that is something.

So I came away with no answers to my questions, feeling more worried and inadequate than ever. Which is a shame as I was actually feeling fairly positive this morning as dd had also managed to self-soothe a couple of times last night now that I have elevated her moses basket mattress and actually took the dummy a couple of times which she rarely does! Congratulations Narmada!

Sorry about the rant. Feel so much better for typing this though. Thank god for this thread!

MsScarlett Tue 15-Feb-11 16:30:17

p.s. thanks elnlol. I too am starting to notice that dd's poos are firming up and she is straining. And I changed a nappy today that wasn't dirty which never happens... sad

narmada Tue 15-Feb-11 16:48:14

Oh msscarlett, how awful for you. nightmare day. hang on to the fact that your DD self-soothed - seriousky that is amaxing fir a refluxy babe. you are doing brilliantly - everyone's still alive, that's your only standard for now!

I would get the tongue tie done ASAP. It could be you DD is swallowing air as a consequence - does she make clicky sounds as she feeds? There should be an NHS clinic - HV should point you to it. If you're in london there's a rapid access one at king's college hospital. tongue tie is v easily missed as most health folks aren't trained to look for it or wrongly belive it to be unproblenatic. sometimes its harmless but I noticed with DS that even though he was piling on weight he could not comfor suck on the breast, presumably owing to th tie. I think he was getting more milk than he wanted and this made reflux worse...

suso Tue 15-Feb-11 16:53:43

Hello everybody,

I think it's time for me to stop lurking. I've been reading this thread since late December when it dawned on me that what might be wrong with DD could be reflux. Have to admit that finding out that other people struggled with a problem similar to mine made me feel a lot better - and I don't mean in the sense of, "oh good, other people are having a miserable time with their little ones". I wish none of us had to go through this, but it was a huge weight of my shoulder that the whole situation wasn't down to me being a rubbish mother. Once I was sure that reflux was the reason why my formerly contented newborn had become so unhappy, dealing with the situation got a little easier. At least I knew why she was grumpy all the time.

We went to see the GP in early Jan and after describing the symptoms, GP agreed that she has reflux and prescribed Gaviscon. The transformation was remarkable, feeding became much easier, DD was smiling again and keeping the majority of her milk down, too. She would still not sleep on her back (we got a breathing monitor and let her sleep on her tummy even though she will not go to sleep in her basket most of the time, she mainly sleeps on us). Everything was still fine a couple of weeks later when we went for her six-week check (when she was actually eight weeks) but over the last few days, things have gone to pot again. Gaviscon doesn't seem to be working anymore, we're having a bit of a spit fest for an hour or so after every feed. She's still below 4.5kg but only just, so maybe that's the problem. I'll go and have her weighed at the baby clinic tomorrow and if she's really 4.4kg (we weighed her last night on the kitchen scales which doesn't give us the exact weight), I'll probably increase the dose to see if it makes any difference. If not it's time for something stronger, I reckon.

MsScarlett, re: giving Gaviscon to your DD: Mine spat most of it right out again in the beginning, so I made a big deal out of every drop she swallowed, cuddling and kissing her and telling her what a good girl she was. After a few days, she swallowed most of it and even seemed to like it. Not sure it will work for you, but worth a try I suppose.

narmada, fingers crossed your DS falling asleep on the bed isn't just a one-off. DD has just slept in her basket for two hours - I've showered, eaten and typed the largest part of this post with two hands, yay!

MsScarlett Tue 15-Feb-11 17:13:34

narmada - thanks for your kind support! Yes dd does make a clicking noise when she feeds. The HV (right one this time) is coming round soon so I'll make sure this gets addressed properly.

suso - as you can probably see from my previous posts and could have written your post! Hope my dd doesn't start not getting along with the gaviscon. Welcome and good luck... x

ledkr Wed 16-Feb-11 09:12:20

Hi ladies.Delilah has started to fuss at the begining of her bottle,she seems to want it but cant seem to settle to it,grumbling and groaning but not screaming as if in pain just fussing-is that a reflux symptom?She has ranat and dom peridone before the feed and then gaviscon in it.

ellnlol Wed 16-Feb-11 13:41:52

Crazy thought here... Isn't it about time Channel 4 made a documentary about life with reflux? I have no desire whatsoever to appear on telly - I'm quite shy and look like hell! But the day MsScarlett described is so similar to so many of mine, and nho doubt others'. If even the healthcare professionals don't get it, how are our families, friends and Joe Public supposed to, and therefore offer meaningful support? How many of us have been made to feel inadequate, or been down the PND road when the issue is emotional and physical exhaustion?
Is it worth asking MNHQ to approach Channel 4 (or anyone else)? Of course none of us will actually have the time or energy to actually take part, or watch it grin
PS to MsScarlett - I had a routine check up with the nurse yesterday but when I arrived (having planned dd's feed, upright 'settling' period and subsequent screaming car journey with military precision) I was told the nurse was ill - very sorry, can we rechedule? I too burst into tears. I was mortified, as was the receptionist! Blame BF hormones hmm

ledkr Wed 16-Feb-11 13:48:15

gosh the upright period is a bind isnt it?How long do people do at night can i ask.I tried to cut corners lat night as knackered but up it came thru the nose due to her cleft.
Can anyone answer the fussy feeding question,its not all the feeds but some,its as if she wants to suck but not actually drink.

ellnlol Wed 16-Feb-11 14:08:41

DD does that a lot - roots frantically and seems desperate to latch on then either just uses me as a dummy (she won't use the real thing!) and 'snoozes' with the nipple but not actually feeding; or won't latch on but is fussy and distressed, rooting again as soon as you pop it away - especially when out and about! So IMO yes, it's reflux, but see what others think.
The holding question I can't answer - at times DD will gp straight down, to the extent that we doubt our sanity over the reflux diagnosis. At other times she seems to be 'out cold' but screams when we put her down. Some nights she only seems to snooze anyway and is never truly asleep - they're the ones we end up holding her most, if not all, of the night because she's just too uncomfortable.

ledkr Wed 16-Feb-11 14:21:57

Yes its hard to define reflux behaviour from normal baby silliness and im a mum of 5!!
Glad you recognise the fussiness cos it is wierd.I am ff,dd has to have special bottles for her cleft,last night we gently held a dummy in place and she loved it but she cant keep one in due to cleft causing lack of suction.
Its hard to risk putting her down too early as she aspirated milk before casusing pneumonia.
I am not too stressed at the mo but can feel it creeping up on me.wink

bethylou Wed 16-Feb-11 21:53:12

Ellnlol I suggested on here sometime last year that I want to start a campaign to get the health professionals to understand reflux better (and I am determined that one day I will get it started, if no-one beats me to it). However, a channel 4 documentary sounds like the ideal place to start and I'd definitely make time to be in it, although I haven't really had the grouchy babies with it (but with sleep apnoea in my now 12 month old and my 3 year old who will see the gastroenterologist next week as he is still on ranitidine and still has reflux!) Do request HQ to request a documentary - I'll ask if you prefer.

I mentioned a long way upthread about a mum who has ended up having her child taken away due to a non-accidental injury after asking the GP for help with reflux and being told new babies don't get it sad hmm. I have felt since then, that there but for the grace of God go any of us with refluxy babies. I definitely will not be having any more as I couldn't risk another refluxer sad.

As for the upright period in the nights, we found with both that it needed about an hour and a half - an absolute killer and thank God they both stopped feeding in the night by 12 weeks! My DH always did one of the upright periods and I did the other. Not quite sure I'd still be sane otherwise.

At 12 months, I get the occasional mouthful back from DS2 (as opposed to the 20 per day and some projectiles I got at 9 months!!) and have a very bonny little man. I know some of you are right in the thick of it at the mo and I just wanted to say that it really does improve with time. With DS1 I was never sure of that at the time. This time round, I knew it was a question of holding out for the maturation of his guts. I hope this will encourage some of you. As for my lounge carpet, it's totally knackered from the crawling and puking phase!!

Ladybiskybat Thu 17-Feb-11 07:42:01

Ladies, hello. It's been a while as Ive been busy well, surrounded in self-pity as I have to go back to work in march and I am worried about leaving DS. narmada I hope that DS is showing little signs of being a bit better, even if it is just one day in twenty. Sorry I cant write all names but you guys have been busy posting I cant remember everyone...i hope those of you with tiny babies are managing to get some sleep amongst the sick and screaming. We saw the consultant monday and in clinic we were surrounded by babies who had very complex needs and made me feel fairly insignificant to be there. DS lost weight again last week and his chest is still not right so of course im still worried. Saw dietician first who reassured about DS dropping milk feeds in the day but said weight loss was ok?! Saw the consultant next and we were the last in for the morning so it was like she'd seen all of the other wee ones in clinic and we were the odd one's out as we didn't have hydrocephalus or an ng tube. She also said weight loss was not a problem. He is getting better ?! And we will be discharged ?! Not sure what else I expected really and I had my mum remind me although things still aren't right now he did used to be so much worse. I can remember it like yesterday and feel like most of my maternity leave has been a blur. To those of you who are struggling with poor babies now just try and get out of the house and go to groups etc who cares what anyone else thinks? I spent 3 months at home and now im facing the return to work I wish id done it earlier. They said DS probably not got asthma but hyper reactive airways. ell how's the weaning? Does anyone post weaning find that if LO has cold/temp they are sick or reflux worsens? Sorry this has been a mixed up post just wanted to update and say hello to the newbies :-)

ledkr Thu 17-Feb-11 08:06:36

Hi lady i can understand your frustration,our dd is on 3 meds and has a cleft palate and has already had an aspiration pneumonia and weight loss,she is only 3 wks.I have asked for a referal to the peads but they will probably discharge us.It seems weird to have a child on so much medication with no review or input.There are much worse things yes but this is ours.

A question.Delilah is waking in the night seemimgly for a bottle but then will not take it and cries and roots and spits and seems refluxy.It took me an hour to settle her last night,i held her up and held a dummy in her mouth gently(she cant keep one in cos of cleft)
She had had her last feed at 11 along with her ranatidine and dom peridone.Wouls this be still working?Should i save a dose and give it to her in the night?I tend to get the meds done in the day to save sleepy hassles but is that wrong?Any advice.

ellnlol Thu 17-Feb-11 10:56:18

Hi Lady, good to hear from you again. Hope you've found some childcare for March you're comfortable with. Must admit I'm not looking forward to that bit - it seems you spend your whole mat leave in this horrible twilight zone then just as things get a bit better, you leave them for someone else to enjoy! Know what you mean about clinic - I sit with my, frankly, huge, rosy 6mo surrounded by very poorly kids, feeling so guilty. Even on MN I feel like there are people dealing with much more severe symptoms than us. Our carpet's in tact cos she a silent refluxer, but when she's literally ripping great handfuls of my hair out, banging her head and screaming, gagging on her own acid and snot, I think, no actually this is shit a bit of a challenge! Sorry, that was wallowy - we've had a bad night.
Weaning is better this time - 3rd time lucky! She seems to have foody days and days when she's just not interested, but wants to be plugged in to me every verse end. She's better at eating later in the day now. Either that or I just can't see any patterns between what/when she eats and how she sleeps. She's pooing much more regularly too, and much less effortfully - haven't had any epic 12hrs straining episodes for a week or so. So all in all, life is good (today)- if only we could get a little more sleep!! Also expecting to be discharged from paed this week too, but have changed GP to one who reportedly 'gets it', so quite happy, (whisper)I think we're on a roll grin.

refluxstressed Thu 17-Feb-11 20:53:48

Hi, im new second time i have tried to add this message has anyone got any good news for me i have a 10 week old baby with silent reflux and milk alergy, i dont think i can cope much longer he never sleeps and cries most of the time i cant get anything done and no one wants to look after him he is on all the meds including losac et etc etc

bethylou Thu 17-Feb-11 21:38:42

Lady I've just gone back to work in the last few weeks and feel like I didn't really get to enjoy the last year that I had off - not necessarily due to screaming here (as that was only at feeding time and the hour it took each time for 5 months), but the worry of the sleep apnoea (and his also long-term ill 2 year old brother, with gluten and dairy intolerance and anaemia) and the hassle of all the sick which meant I couldn't really go to anywhere with nice floorings!! I'd much rather have the ruined carpet that I have, than the screaming that many of you have endured.

It's such a sad situation to wish away our precious maternity leave, but I'm trying to forgive myself for it, enjoy DS2 as he is now and at least recognise that getting through the last year in one piece myself has pretty much been a small miracle!!

We have a brilliant couple in their 60s who childmind DS1 and 2 and have taken the sick/apnoea episodes in their stride and I'm thanking my lucky stars. I was terrified before I went back to work (having already done it once with DS1 without being unduly concerned) that I wouldn't cope and that something would happen to DS2. However, I'm loving being at work as it means I get a break from the stress - I can't worry about my own DS while teaching other people's! I hope this will give you some reassurance. I'm in awe of all of you who have coped with screaming, as I know it would have pushed me over the edge.

I'm afraid I can confirm that things get much worse when DS2 is ill-much more sick, even now, and through every set of teething too-what fun!

Refluxstressed the good news is that my two DS (one silent refluxer and one very definitely not silent!!) are now nearly 3 years and 12 months respectively and are doing really well. We are nearly at a point where the youngest sleeps through (which, let's face it, for us is the crux of it all, after sorting out their pain) and have two very happy boys who are energetic, smiley and total delights (I'm not at all biased!!). I'm sorry you are having a hard time now. Take one hour/day at a time and yo will find that the times passes quicker than you realise.

Tras Thu 17-Feb-11 22:05:10

Hi Bethylou & others, At what point did your Dc stop vomiting? My DD is 19 months and still has reflux. It has definitely eased and now she only has a projectile vomit every week or so. (If teething, more often.) She has been seen by a paediatric dr but we were not given much help.

Basically because she is putting on weight, they were not concerned. Because she has difficulty swallowing lumps I spoke to her G.P who gave her Omeprazole. She has had it a week now and I don't see much difference in her sleeping. Not sure if I should take her off it or keep her on it for another week? Ulcers and bad stomach run on her fathers side so I don't want her to get worse!

We go for allergy testing tomorrow so not sure if that affects her reflux as well! Any advice is welcomed.

Ladybiskybat Fri 18-Feb-11 18:47:15

bethylou thanks for post...made me cry. I am trying so hard to enjoy him before I go back but it has been a long hard struggle. He is such a lovely, smiley boy when he is well. People always compliment me about his smile and then I get people asking if He's really ill cos he looks so happy. Grrr if only they knew?! He has lost weight again this week now only 4oz gain since beginning of december and having been on 91St centile for 4 months now under 50th...but nothing to worry about angry I am his mother I will ALWAYS worry about him. Saw GP today about his rash looks like Ive scalded him all over trunk and back now on head. He thinks viral and now should be getting better as rash has appeared. Still not eating very much at all. Very sour breath again and he says to call on mon or tues to update on progress and if no change we can have bloods done to check He's ok. Going back to the returning to work though, I really dont like my job so I dont think it helps. He'll be at nursery for 2 days and grandparents for 2. Think I just need to be brave I have found ideal job but it's an hour away from home and would have to do 5 days. Dont know what to do for the best now. refluxstressed I can say the same as others. Some days are better than others and as they get older you have more days that are better. Try and get out and about. I found that joining a baby group at our sure start centre has kept me sane. I am lucky with my family as they are very supportive but no one really understands. tras Ive got a silent refluxer that was a happy chucker until about 4 months. His sick is random now and of varying amounts. He is 8 months and I thought we'd seen the last of it but have now discovered thats is not so. I reckon it just keeps going. It is the pits

bethylou Sat 19-Feb-11 21:49:13

Lady without the amount of screaming that you have endured, it has still been the hardest year of my life so I do understand. We are programmed to worry about our children and I have proved in the last 12 months that it was a good job I did as it took a long time to make the medics listen!! I knew my stubbornness would come in handy in the long run! At 8 months you should be about to turn the corner in the next few months. I hope it comes sooner rather than later for you. Hang on in there and good luck with work!

Tras I was always told that babies were supposed to grow out of reflux by about a year (but they forgot to tell DS1, nearly 3!!) The problems run on my DH's side of the family too, so I didn't necessarily expect the boys to grow out of it easily. DS1 sees the gastroenterologist on Tuesday - I will update what we get told then, but he does have daily diahorrea and tummy ache too, as well as having spent 6 months last year being anaemic and now gluten- and dairy-free to try and help him.

My friend's DS2 had the fundoplication op that they can do after they realised how severe his reflux still was at 20 months and started to cause internal bleeding. I say this not to worry you, but to show a) how rare it is that they do the op on typically developing children and b) to keep an eye out for any blood in the vomit as this was why he was operated on.

The other thing to ask for is a referral to your local NHS speech and language therapy specialising in feeding/sucking and swallowing as they can help you with aversion to food, which may be why she gags on lumps still. I accessed it through the GP and HV (but only knew about it through working with pupils with special needs!) Finger feeding and, separately, sensory play with paint/jelly/shaving foam etc.. are supposed to help - I'm sure you've probably looked into it all, but just saying in case you haven't been in that direction.

As for stopping being sick? DS1 was a silent refluxer but still definitely has reflux now - lies in bed and tells me he's got milk in his mouth an hour after eating a yoghurt and has a lot of sicky burps, most of which he contains and deals with. DS2 is still puking a few times a day when ill/teething (i.e. regularly again at the mo!) but has days in between without any.

beijingaling Sun 20-Feb-11 08:06:05

Oh I'm so glad this thread is here!

DD is almost 7 weeks and diagnosed with reflux almost 2 weeks ago. White tongue, screaming in any position other than upright, very farty, obviously in pain but not always from gas, acid breath, curdy sick, acid spit up, dribble. Usually at around 11 and again at 4 during the day. Reading others posts has been like reading a checklist.

Were using mylanta at the moment but the dr said to only use it for about 4 days. 2 weeks later we still need it.

Never bought a sling or Bouncer. Going to shops tomorrow to look.

MsScarlett sorry to see you from the jan2011 pn thread

Tras Sun 20-Feb-11 20:11:01

Thanks Bethylou, must get the paints out tomorrow for a bit of fun. The consultant at the allergy clinic said that if she still has reflux (i.e puking) by two years they would recommend an xray to see if she has a Hitus hernia. I still think that even if the actual vomiting stops, she will prob still have a silent reflux for a while.

The allergy specialist recommended we come of Lactose free milk and challenge her with full fat milk. That was on Thurs and so far so good. Apart from a tiny deterioration in eczema, there hasnt been any diarheoa etc. Hopefully that will continue! would love to hear what the gastroenterologist recommends. smile

Tras Sun 20-Feb-11 20:16:01

Ps the only way I seem able to get the omeprazole into my DD is to mix it in her wheetabix. Is this ok? It still does not seem to have made a great deal of difference to her at night time. Hard to tell if its really helping at all. hmm

bethylou Sun 20-Feb-11 22:37:30

As far as I know it doesn't make a difference. We moved onto lanzoprazole which has suited my DS2 much better and he has it on his tongue as a dissolvable tablet because it tastes of strawberry.

With DS1 we haven't even made enough progress with lactofree milk to try a challenge. Will spend tomorrow evening deciding what we want to ask the specialist on Tuesday and what we hope to get from the appointment.

MsScarlett Mon 21-Feb-11 13:14:36

Hi all!

Just a quick update. My HV recommended colief and dd has responded wonderfully to it! She actually slept for 5 hours last night!

Not sure if that means I am a complete fraud and actually she in fact just has colic, or whether her reflux is aggravated by a lactose intolerance (basically colief is lactase enzyme so it breaks down lactose in my bm)?

Anyway I'm sure most of you will probably have already tried it, but in case any of you haven't, then do and see if it will help. It is expensive (£10.99 from boots) but hv says gp should prescribe it now we have tried it and know it works.

She has only had one projectile puke since we've used it, and she goes straight down after a feed with no screaming most of the time. She even doesn't mind having her nappy changed now! Poos are still green and have darkened to a blacky green now so not sure what that's all about hmm.

Hi to beijing! grin I too am sorry to find you here sad

Quick question, will lactose from my diet pass to dd in bm? Or will there always be the same amount of lactose in my bm whether I consume it or not? Is it cow's milk protein, rather than the lactose (the sugar) that normally causes a reaction in the lo if the mother eats dairy? I'm thinking of cutting it out anyway as in the past I have found that too much cows milk triggers my migraines so we may both benefit...

bethylou Mon 21-Feb-11 14:34:52

MsS yes lactose will pass over - you might be advised by health professionals to go lactose free, which I'm doing for DH and DS1 now anyway as they have both become lactose intolerant in the last year. Colief definitely helped DS2, who wasn't officially lactose-intolerant, and definitely didn't have colic symptoms, just reflux. Glad it's helping!

MsScarlett Mon 21-Feb-11 15:06:24

Thanks bethylou

Yeah, pretty sure dd doesn't have colic. I WISH she only had symptoms for a few hours in the evening! DD's symptoms happen day and night and she has every symptom described on this thread...

Also, can anyone advise on tongue tie? It was spotted by hv and I took dd to see gp about it. He stuck his finger in her mouth and he said that because she has a strong suck it won't be affecting her feeding and that it therefore shouldn't be corrected. Is this right? My understanding was that if the lo has no problems feeding then it shouldn't be corrected, but clearly my dd DOES have problems feeding, obviously this may be due to reflux and nothing to do with tongue-tie, but if there is ANY chance that it is causing problems e.g. causing her to swallow air etc. then I would be inclined to get it done as it may make things better for her and it is a relatively minor procedure...

narmada Mon 21-Feb-11 21:06:56

Hi MsScarlett in answer to your questions:

Tongue tie - I would get it done. It can cause speech problems in later life, might be fine, might not, but it is a very quick and simple procedure. Apparently tongue tie can sometimes exacerbate reflux by encouraging air-swallowing like you say. Also, my thinking is these poor little babies with reflux don't need any other feeding impediments, do they? Our GP was also dismissive of the procedure but we went and had it done anyway. It cost £80 - there is usually a weekly clinic somwhere local.

Re lactose - true lactose intolerance in babies is very very rare. What you eat will not affect the amount of lactose in your breastmilk. It's a sugar generated in your body. Most babies with sensitivities are sensitive to the cow's milk protein, which can pass into breastmilk.

What might be an issue is oversupply: if your DD is getting lots of watery, lactose-rich foremilk then that could be giving her the symptoms of reflux, or exacerbating physical reflux owing to a weak valve in the stomach. The kellymom website has information on identifying oversupply and how to remedy it..

narmada Mon 21-Feb-11 21:08:38

To tras - I think omeprazole and lansoprazole need to be given in a fasting state - e.g., at least 30 minutes before food. At least that's what I understood and what I've been doing with DS.

MsScarlett Mon 21-Feb-11 22:00:01

Thanks Narmada.

I did ask the HV about foremilk/hindmilk imbalance, but she said if lo was getting too much foremilk she wouldn't be gaining weight like she is... Which tbh doesn't make much sense to me. hmm HV came round today and I was glad because she saw dd at her worst, when she weighed her she starting screaming, choking and went purple and you could smell the acid on her breath. She is contacting the gp to make sure we can get colief on prescription and she is contacting a breastfeeding expert at the hospital on our behalf as she is also of the opinion that we should try correcting the tongue-tie.

Anyway, sorry to blabber on as per, hope you all are ok! grin x

narmada Tue 22-Feb-11 10:43:54

msscarlett babies still put weight on drinking milk with high lactose content - lactose is basically sugar so IMHO your HV is talking complete nonsense!

Sorry you're having such a hard time

bethylou Wed 23-Feb-11 15:06:59

Narmada I think I've got it all wrong! Thanks for correction on lactose-think I knew it was CMP, not lactose that corss over. Sorry for misinforming.

As for lanzaprozole - I think it does say to give it half an hour before. It seems to help DS whenever though, although obviously optimal to follow the instructions. DS2 is such a gannet that I would struggle to get it into him 30mins before food/milk in the morning!

Hospital appointment for DS1 was cancelled yesterday as they'd booked him into the adult clinic by mistake. Wouldn't have minded so much if I hadn't rung adn asked them this 3 weeks before! I got a whole 3 and ahlaf hours' notice! As you can imagine, I am not impressed. Have to wait another 2 weeks now. sad

bethylou Wed 23-Feb-11 15:07:51

Sorry for spelling errors-I'm supposed to be working so typing too fast!

narmada Wed 23-Feb-11 15:15:31

bethylou I get everything wrong, all the time, so you're in good company if you did!

What an absolute bummer about the hospital. You must have been livid.

We also have had the problem getting meds in on an empty tummy, but more because it always seems to have residual milk in it even 4 hours after the last feed . I think I need to ask the paed about transit issues

All fun and games here. Our 18 wk DS is either taking a very long time to come down with an illness or has developed a feeding aversion. It sounds totally bizarre but I am desparately hoping it's the former. For the last fortnight, it has been taking me ages to feed him and he pretty much won't touch anthing until about 2 pm - whether this is when the meds kick in or when he just can't hang out any longer I do not know.

narmada Wed 23-Feb-11 15:17:02

Ps bethylou, I give the lansoprazole after the first milk feed but about 30 minutes to an hour before the next feed. Or at least I used to when he was drinking

narmada Wed 23-Feb-11 15:30:15

PPS has anyone whose infant is on losec/ lansoprazole discussed with their paed giving the meds as a split dose - eg morning and evening instead of all at once? I suspect DS's lansoprazole is wearing off by around 9 pm and causing him to be really resstless in the late evening ...

jjkm Wed 23-Feb-11 19:12:38

I have twins. One has severe reflux, and the other has moderate reflux. The first has it severely enough that it appears to compromising her airways. The second has some airway problem, but she doesn't whistle with every breath. They were born 3 months premature, and have not yet gotten to the point where they can take all feeds orally (they are still hospitalized for that reason). They are about 4 months old now. Currently, I am forced to supplement with formula because they need more milk than I am able to pump.

At this point, both are on reflux meds, and I've seen the following:
For a while, while on my milk only, DD1 was wincing less with reflux than she used to. They are trying to give her more of my milk but still some formula, and she is still retching, coughing, and gagging at the end of her feeds due to the reflux.

They saw reflux on a test they did for DD2, despite her not crying out during feeds. DD2 seemed to fall asleep as the feeds when in (she gets tube fed). Since they've added reflux meds and formula, she cries out at the end of every feed.

I'm going dairy free in hopes that it will help, but the hospital is supplementing with a lactose reduced, but still cow's milk based, formula. DH cannot drink milk (he is not lactose intolerant), so I am worried the girls may have a cow's milk protein allergy.

Currently, we are looking at surgery (nissen fundiplication) for both to make it harder for them to reflux. We figure that the surgery will help them heal from the damage already done, and to prevent them from aspirating (we nearly lost DD2 due to her aspirating, and DD1's reflux causes feeding and breathing problems). We have to have a gastic feeding tube inserted for each as well. The reflux is causing some oral aversion, so they are eating less than 50% of what they need. The doctor says surgery may be needed for the reflux, but will be much more invasive if done with the g tube already in place, hence us deciding to do surgery now.

Anyone have any similar experience or success with a nissen? Reflux meds aren't working for our little ones.

bethylou Thu 24-Feb-11 20:55:38

jjkm welcome to the thread. Sorry to hear about the difficulties that your LOs are battling with. I know of one 2 year old who had a Nissen's last year and it has totally solved the problem for him and the internal bleeding that he was having has healed. However, I don't know of any little babies having it done. I know that a lot of us on here have had problems with the reflux meds not really doing enough. It has taken a long time for my DS to hold his own, pain and vomiting-wise, on any of the drugs and I'm sure that's because he's now beginning to outgrow it. I'm sorry I can't be of any further help. I understand that having the procedure done is not to be taken lightly, but I'm sure you know that already. Good luck and do come back and talk to us along the way.

narmada I'm afraid to say that reflux saw off breastfeeding with both my two from about 16-18 weeks. I'm sure it's a coincidence, but thought I would just let you know what happened. DS1 hadn't been on meds by then as he was a silent refluxer and wasn't picked up as generally happy apart from the horrific screaming feeds. He just became aversive, plummeted down the scales and totally refused any milk in bottle or breat for 2 days. After 4 months of screaming, we decided that he would be better on a bottle that he could have upright and it would help my sanity as DH could share the load/deafness!!

Sadly, DS2 followed suit. I swore that I would not try and carry on for so long the second time round as I had also to think of DS1, but DS2 wouldn't take a bottle so we got to 5.5 months of screaming/arching/covering us both in sick before I handed DS2 to DH with a bottle and went out. It took 15 minutes of resistance (screaming) before he decided that it was okay.

I really hope for you that it is an illness (of that makes sense), but I'm afraid that from my own experience, it may not be. I would say that we were told never to try and force them to feed, as that doesn't help the aversion but it was a horrid situation to be in. It was only when DS2 was born and fed well initially that I realised I wasn't a 'failure at breastfeeding', as I had labelled myself, but that my boys were not able to cope with it due to the reflux.

ledkr Fri 25-Feb-11 12:00:42

dd 4wks i waking for feed in the night but then wont take it,she is rooting and crying and takes the teat ok but then as she starts to suck and the milk comes out she cries and wont take it,sometimes she will then have a dummy and a cuddle and then i try the milk again and she takes it or sometimes she will eventually take it if i just persvere and keep offering it. She is on gaviscon,ranatadine and dom peridone.The 2 meds she has thru the day-last dose at 10ish and the gaviscon in every feed.Am i doing something wrong?Its annoying cos she has a cleft palate too so feeding takes ages and then i have to keep her upright so feeds can take up to 2 hrs.I have also noticed her doing this in the day as well but not as badly and she is also starting to snack rather than take a full feed which is very time consuming.DH is back at work Mon so i will hav to fit it all in with the school run etc,any suggestions?

narmada Fri 25-Feb-11 12:41:38

Welcome jjkm it does soud like you have an awful lot on your plate. I do so hope the surgery's a success.

Is there no way the hospitalcould supplement with either the preemi version of neocate or banked breast milk? At least then you could rule out cow's milk issues as part of the picture. If your DP cannot drink milk and is intolerant to the protein, it seems mad that they are giving your babies cow's milk based formula. I think also that cow's milk protein issues are often suspected where maximum doses of medication don't seem to make a dent, but I could be wrong about thst.

Bethylou, I made it to 5 weeks BF with DS, and gave up for almost identical reasons to you - needed DP to share the load. DS has been pronouned fit and well, no urine infection, nothing, so it looks like we are facing feeding aversion - what I dreaded. I don't think trying to wean him onto neocate has helped as presumably now he also associates the bottle with the yuck taste.

jjkm Fri 25-Feb-11 12:59:18

Interesting. I had thought that they had supplemented with neocate at one point, but I'm not sure. When they pulled them off of pediasure, it was an instant resolution to their loose stools. I will have to find out if they were using the neocate. I did a little more research and it seems that the formula they are getting has cow's milk, but that it has those proteins broken down, so is less allergenic. We have postponed surgery for our girl with moderate reflux. She is finally starting to take her feedings by mouth, so we have hope she will come home without a feeding tube. They are also reevaluating her to see if she is still aspirating her fluids. She may be getting big enough and well enough for us not to worry about her.

Bambinocino Mon 28-Feb-11 16:07:37

Hi everyone, have just discovered this thread. I have a 4.5 month old DS with reflux, diagnosed when 6 weeks. It's terrible! He needs to be jiggled all day long and is constantly uncomfortable, straining and grunting unless asleep (which he mainly only does in the buggy during the day). He's on ranitidine and omeprazole (started omeprazole last week) and as of last Thurs I cut dairy out of my diet to see if any effect, am bfing him. No results yet but hoping for some improvement.

He wakes between 2 and 5 times per night and at the moment won't sleep beyond 6am. An hour before his 2.8 yo sister wakes up. It's so hard to face the day! I'm not getting anything done either, our flat is a tip and my admin is months behind. I'm being treated for depression too (cognitive behavioural therapy), partly PN I think and partly PN from last time that I didn't recognise. And my family (though very supportive) lives on the other side of the world so no practical help, it's just me and DH, who is great but exhausted too and frustrated at having no time to do anything but work and jiggle.

So there's my rant! Hope to be able to share a few tips and some support on here. It's hard to discuss in RL as I find people's eyes glaze over when you mention you're having a difficult time.

narmada Mon 28-Feb-11 16:14:31

I am in almost the exact same position as you bambinocino. DS, same age as yours, is on PPIs and we are currently attempting to go milk free. It's really, really tough and I also have PND, so you have my deepest sympathy.

The having-no-time-to-do-anything but work and jiggle is oh so familiar and oh so depressing. I am adjusting but it is very hard to recover from PND when you've got no headspace. In fact, I think it is a monumental task, especially when coupled with sleep deprivation.

Does your DS eat OK or does he have food refusal issues?

Big hugs.

Bambinocino Mon 28-Feb-11 17:13:49

Thanks so much narmada! It really helps to know others are going through the same thing.

Re feeding - DS pretty much snacks all day long, is never latched on for more than a few mins at a time. He's gaining weight pretty well, following the 25th centile, so am grateful for that. But I managed to get his sister (didn't have reflux) into a good feeding routine when she was a baby, 5 feeds a day, and had some sense of control over my day. With DS am finding the constant feeding a real pain and never know where I am. Basically if he cries I try feeding him and if he has some then he does! Not sure how that's going to work when it comes to weaning.

The CBT that I'm having for the depression seems to be quite good in theory but is definitely diffciult to make progress when you have no sleep or time! I find I tend to just go into a panic when I'm trying to put the techniques into action so it's a bit up and down. Having another session on Weds though so hope it might help.

Hope you are making a bit of progress with the PND. Is the pits.

narmada Mon 28-Feb-11 19:21:17

I am on loads of meds (mirtazapine and sertraline too) and they have really helped. Are you considering them? Sertraline is considered relatively safe for BF if so. I am on wait list for CBT but I am not holding out for it happening anty time soon, the NHS being what it is! Hope your session on weds goes well.

My first DD had reflux but to a lesser extent. She was BF and a 'little and often' girl, but to be honest I think that is the norm for most BF babies, refux or not. It's hard with another little one around though.

It is great that your son is gaining weight - you should be really proud of yourself for that as feeding a refluxy baby is HARD work.

bethylou Mon 28-Feb-11 21:20:28

Hi both. Having had two refluxy ones, can I mention the routine that I used? I totally know that routines are not for everyone, but they did work for me and meant, that despite the hideous screaming feeds that I endured with both boys, they only started the next feed three hours after the previous one started. We used the Baby Whipserer's EASY approach which was for eat, activity, sleep and 'you' time. I know that 'you' time is rather tricky with the jiggling, but it at least meant that the sitting upright was limited to after every three hours and not less (especially at night when a 90 minute sitting up session was awful). DS2 was on a three hourly routine of this type by a week old. I'm guessing I'm lucky that both my two suited routines, but maybe it's worth a go. I also realise that with very unsettled babies, feeding so that you get a break from the crying is also helpful.

Bambino I vivdly remember the glazing over from even some of my quite close friends when I mentioned reflux for about the 8th time! I think that if people haven't experienced it, they have no idea what we are on about!

Bambinocino Tue 01-Mar-11 08:56:06

Morning - a bit groggy today after 3 wake-ups, gah. Narmada - yes have considered meds and in fact have a prescription for Setraline in my drawer, but haven't filled it yet as in my typical anxious way am worried about possible unknown long-term effects on DS...I thought I'd box on with the CBT for a bit longer and see how I got on. I do feel less desperate these days than on the day I went and got the prescription, must be a good sign.

Thank you re the weight gain, is easy to forget small achievements in the daily slog! grin

Bethylou that is a vg tip, haven't tried that routine but might give it a go. I am keen on having some idea of what's happening in the day and when I'm going to be feeding DS. As opposed to my current chaos. How did you make sure your DSs got enough milk at each 3-hrly feed to keep them going? My problem is that DS will feed for a few mins then pull off, and sometimes then refuse to feed for 5 hours or something, then have another go. Is very messy and newborn-esque, I basically just keep trying all day, each time he seems as if he might need something. God knows how he's gaining weight!

This sitting up for 90 mins after a feed thing, does that mean bolt upright as in you have to hold them, or does sitting in a bounce chair count?

bethylou Tue 01-Mar-11 22:40:14

You only have to hold them upright if they squiggle and squirm (and sometimes puke!) if you lie them down. My DS1 and 2 both woke after 5 mins if I tried to lie them down after a feed, day and night for about 6 months. A chair will do and my HV actually advised sleeping them in their car seat for a couple of hours after a night feed so that they could be upright and I could sleep. She suggested setting an alarm then to get me up and to lie them down if they didn't need another feed. We only did it a few times when desperate as we knew that car seats weren't great (and actually the angle was all wrong for DS2's reflux anyway - he screamed when we put him in it) but it's another thing to consider as and when you need to.

I was very lucky with my milk supply I think, in that I had a lot of milk. Both boys only ever fed for 10 mins and then went approximately 3 hours. There is a section in the Baby Whisperer book about changing a baby from being a 'snacker' into following more of a routine. I have to admit, when DS1 started pulling off the breast due to the reflux, I did have to wait until he'd calm down and have another go several times at times (but definitely not forcing him to latch on). I guess making a note of how long they feed for and how long they go between feeds afterwards for a couple of days will help you to guage this. In the early weeks (about the first 4 or 5 weeks I think-it's all a haze!), I did feed every three hours day and night whether or not they were demanding it. This seemed to help at night though after a while, as both boys stopped needing a feed in the night from 8-10 weeks, as they got plenty in the day to keep them going (and a dream feed at about 10pm with the long sit up after) It often felt a bit strange to start with to wake them for a feed, but did seem to really help in the long run. I'm no expert at any of this - it's just worked really well for us, especially having now had two reflux