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.

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.

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