Support thread for all parents with reflux babies...

[PosieParker]

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.

[Lavenderboo]

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]

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]

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.

[virgo1979]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.

[Hazeyjane]

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]

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]

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]

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]

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]

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]

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]

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

[hildathebuilder]

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]

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!