Reflux / Infant Gaviscon - advice??

Damien has finally been prescribed Infant Gaviscon for his reflux problems and he is going to be starting on it tonight.

I just wondered if anyones elses baby has been on this and/or had reflux. Damien has it probably because he is premature (lots of prem babies have this problem) but I know full termers can get it too.
My cousin who was born full term (2 weeks older than Damien) has reflux but the gaviscon didn't work for her and now she is on other medication.

I don't remember anyone mentioning that their babies had it but I may be wrong and your advice/stories would be helpful/reassuring that I'm not alone.

 

[tracyM]

Callum had severe reflux and was put on a medicine called cisapride at a few days old. We just added a few ml to each bottle with a syringe. Once his sucking reflex improved, he also had a milk thickener which made his milk the consistancy of school custard - no way could he sick that back up .

Alex also has reflux, but nowhere near as bad as Callums was (Callums muscle didn't close at all, Alex's does close but not as it should. He's having his weight closely monitered to make sure he's keeping enough down. He's dropped from 50th - 25th centile in first two weeks, so we're keeping fingers crossed he'll start going back up. Daniel had pyloric stenosis (the opposite of reflux where the muscle doesn't open properly)

All three boys also have varying degrees of milk intolerence - Daniel had 24 hr colic on regular formula and ended up on Soy formula, Callum lost 2 lbs in SCBU before his milk was changed to a pre-digested formula, Alex is on Soy formula but if his weight doesn't start going back up to 50th centile, he's going on to the the pre-digested gunk.

They do grow out of it / learn to cope with it themselves - Daniel improved at about 6 months, Callum still has reflux but takes gaviscon when it hurts or gets too much for him. Callum and Alex are both preemies so I guess the reflux may be linked in some way - my brother was also a preemie and had the same reflux as Callum

There's a few things we learnt while Callum was in SCBU that we've done with Alex, so hope you'll find them helpful

- we use doubled over towels in the moses basket / pram rather than sheets. We'd be changing sheets 6 times a day as the sick spreads out a lot more, we can get away with changing the towels less, and the mattress doesn't get icky. Still haven't found any towels big enough for the cot.

- the nurses looking after callum tried all sorts of ways of winding, some would wind him every half ounce, others would just do him once at the end. Eventually, we settled on once at the end - he'd bring up milk with each winding, but still the same amount if we left it till the end. Alex doesn't like being left until the end, he's sick over and over if we do it that way so we've settled on every ounce for him.

- raise the head end of the cot / pram / moses basket.

- bibs, bibs, bibs - Alex has major paddies if his clothes get wet so we're going through loooooads of bibs - we've just bought some really thick ones with a soft plastic backing which he seems to prefer.

We've had loads of help with Callum and Alex, Callum because he was in SCBU when he was diagnosed, Alex because of the family history, but it took us 3 months to get any response from doctor / health visitor with Daniel.

You're definately not alone - we visited loads of parents in similar situations when Daniel and Callum were small to offer help and advice because the health visitor didn't have a clue. I'm sure there are loads of parents out there going through the same, but are being told it's normal for babies to be sick - it's not until the HV sees baby bring up half a feed in one go that they'll do anything

Charlotte is absolutely fine - no reflux, no stenosis, no intolerences

How's Damiens weight gain?

Tracy xx

 

[Dee1985]

hi sami i did pm u, i went through the same thing with Dior i never had any idea what it was so i just got on with it, it was horrible thou she cryed afta a feed she was only happy if she was upright i could never lay her down else she would cry with pain then when she was sick after a feed it was all lumpy looked like cottage cheese. the only way Dior would sleep was up on my shoulder, Dior never did have medication cuz i didnt bother to tell any one. the best things i learnt to do was, when she was having a cryin fit and kicked and i couldnt calm her ild swaddle her in her blanket and rub her back then let her sleep in her baby chair so she was upright, i never knew what it was till i watched a show called "the baby wisperer" on the show the lady said its like a burning pain for the baby and it scares them and the best thing to do is to just comfort them through it. Dior was 5weeks prem and it lasted for bout 8weeks.

 

Thanks for oyur replies.

Dionne - I got your PM thanks. Damien won't be swaddled anymore. Sit him up alot but he is still sick and still seems to hurt with it now. It seems to be getting worse, not the amount he is sick, but the pain he seems to be in.

TracyM - thanks for all your helpfult ips. So far we have tried all different ways of winding, on his side, tummy, sat forwardm, upright, head in different directions, side to side swaying - you name it we've done it! Also winded every half ounce, every ounce and just at the end. Settled on just at the end as he will just be sick the same and bring up the same amount either way. He will only burp once.

Moses basket is raised all the time....worked for a while but he seems to be finding immunities to things and is still a grouchy git.

Bibs - we go through MILLIONS of the things. At least 2 every feed. Should just start using hand towels Got to get some more actually - 20 doesn't seem to be enough.

What is pre-digested milk?

The Gaviscon isn't helping still (not sure how long to give it though. Most people I have spoke to so far now have told me it didn't work after a couple of days for their babies and they got changed onto things like Domperidone and Ranitadine but I don't know what I should do. It seems worse to me now that he can't have anything for the wind either. Such a pain. He won't burp just sicks, and when he does burp there is more sick.

His weight gain is good, staying on the 50th centile, but as he is prem they want him gaining more I think.

How do you know if they have milk interolerance? I have eczema (badly as a child) and I don't know if Damien will have it but that can show a milk allergy can't it?

Do you have any experience with the formula's SMA staydown or Omneo Comfort??

 

[Dee1985]

i found dior was sick often on sma so i put her on cow and gate hungry babies and it was better for her i think sma was a bit rich

 

SMA staydown is a reflux milk, I've heard the normal stuff can be rich though.

Thanks Dionne.

Had a CRAP morning so far. After his feed at 4am he has kept virtually nothing down and just been sleepy. Made him wake up at 11:30am and he took 1oz and then brought it back up again. Gave him 3oz at 1pm coz he woke up, burped and then 2 minutes later brought at least 2oz up and zonked out again. Totally soaked me, jeans, sofa,etc. He is plastered in it too but I daren't change him incase it makes him sick again from unsettling him.

Phoned the HV about the Gaviscon, got to give it a week. She said if he is sick more than he takes down today then get someone to look at him. He just isn't himself today poor thing.

I'm really struggling today and now with this too I know this is sod all to go through really, I just dunno what to do with him.

Feel like a crappy mum at the moment coz I can't make him better

 

[tracyM]

the pre-digested milk is called pregestimil - the proper description of it is that the proteins have been hysrolised (??????) hence why we just say it's pre-digested. Because Callum was losing so much weight, it was the last resort to get him to digest something. It's a horrible milk - tastes and smells like cardboard and the nappies are rank, but he gained weight so we stuck with it until he was 3 months old, and then put him on soya.

The staydown milks are thickened milks. Because Callum was on pregestimil and then soya, we added milk thickener to it. I don't know how thick the staydown milks are, but we had to add a lot of thickener to get it thick enough to stay down - I think we ended up using double the amount it said on the tin.

Cisapride is more or less the same medicine as Domperidone - it works by speeding up the bowel and stomach contractions to get the milk through quicker before it gets sicked back up. I don't think it made the slightest bit of difference with Callum, but we carried on using it just in case.

There's no tests as such for milk intolerence (they can do a bowel biopsy but probably won't). We had daniel diagnosed by putting him on soya for four weeks and then back on regular milk. If the symptoms stop in the four week soya trial and come back again when you go back on the normal milk, the HV should agree its milk intolerence and arrange for you to get soya milk on presecription (it's pretty expensive to buy). Daniel started being a grumpy bum at a few days old, by a few weeks he was covered in excema, had asthma, screamed more or less 24/7, tense muscles, horrible nappies that smelt 'off'. Some babies have weight loss / failure to thrive but Daniel didn't, and when there's also reflux, they're likely to say weight loss is because of reflux.

Alex has been weighed this morning and has gained 10oz since Monday so we're starting his first four week milk challenge tonight and sort out the reflux once we know whether he's milk intolerant or not. At the moment we're buying his soya formula and without going through a milk challenge we won't be able to get it on prescription.

It's not sod all to go through when you're the one going through it. It's heartbreaking knowing that they're suffering and nothing you do helps them. If he carries on being sleepy and he's not normally like that, get someone to look at him - they'll check his blood sugar levels and if they're low it will give them a shove up the arse.

Tracy xx

 

Thanks for your message TracyM.
Think Damien is a bit poorly at the mo with something or other so going to keep on with the Gaviscon for the week just to make sure it's not that making him worse.

Not changed his milk yet. Going to ask for a thickener if the Gaviscon doesnt work (which it's not at the moment).

Got to keep an eye on Damien, he's being sick and poo'ing (TMI sorry) alot which is unusual for him, but he is drinking which is a good thing and has wet nappies so I know he's not dehydrated.