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.

[daisylulu]

Buttonmoon- no experience of Sma staydown but I add a couple of scoops of carobel to Js formula. carobel is made by cow and gate and thickens the milk. Any pharmacy can order it in.

Re ranitidine - unfortunately it won't stop the vomiting as it's just an antacid. Quite often domperidone is prescribed alongside ranitidine to help with the vomiting. My LO was initially prescribed both and the effect of domperidone was instant- her projectile vomiting stopped for as long as she was on the right dose. At the end of the day though the key thing was getting her onto a hypoallergenic formula.

Good luck with it. I knowhow frustrating finding the right combination of drugs and diet is.

[buttonmoon78]

Thankyou. I will ask about the carobel.

[LucyMayHughes]

Omg, tried Dr. Brown's bottles today- it's like he's a different baby. SO much more comfortable while feeding and more contened in general. Able to take more because wind not bothering him.
Just thought I'd mention my consultation with the gp on this topic. When I described baby's symptoms, the doctor told me that I was holding my baby incorrectly, and that was where all of the problems were stemming from. What an idiot! Just goes to show, some doctors know nothing about child care!

[buttonmoon78]

I'm not saying this out loud, and he's only had them for 2 feeds so far but I agree - Dr Browns seem to be having a good effect re the wind. It's too early to tell the impact on bottom wind but tonight might tell.

[Beautifulbabyboy]

I feel like the opening of AA meeting. My name is BBB and I have reflux.

I am off - on the basis of opinions on here - to see Dr Linley at GOSH on Tuesday. Can anyone give me any more information on him? Like another poster I have always been sceptical about "intolerances" (celebrities and their stupid excuses for not eating bread) but don't want my BBB to be in pain. Has anyone found that changing to protein free milk has made the situation worse?

[daisylulu]

Hi BBB. Welcome to the group and sorry to heat about your LOs reflux.

My DD sees Dr Lindley. She has cmpi. It is amazing the range of awful symptoms that can result from this. I too have always been a bit sceptical of intolerances even though I can't tolerate dairy very well myself.

Lindley is lovely. He listens and is very reassuring. In my case he was of the view that Js reflux is just a symptom not the cause. She has been on neocate for a couple of months now and is like a different baby. The only negative thing about the formula is that it doesn't come in cartons and it is very thin so I have to thicken it slightly with carobel.

If you have any specific questions re anything else just let me know.

Good luck!

[buttonmoon78]

Hi again BBB.

Welcome! Re the TT anti colic bottles - our gp suggested getting some and I was currently using the TT ordinary ones so thought they'd be the obv choice. I did a little review reading online and the TT ones are universally thought of as rubbish but the Dr Browns ones have inspired an almost cult like following!

I can safely say that they have made a difference in quite a dramatic way. DS spent 6 whole hours in the same clothes overnight which is incredible. He has not farted once since we started on them. We're now 5 feeds in so I'm guessing it's probably reasonable to start drawing some conclusions.

He still has reflux issues but I'm hopeful that this will at least contain or lessen some of the symptoms.

Great news on getting an appointment quicker. Tuesday will be here in no time

[buttonmoon78]

I've just created the 'All new deluxe reflux support thread' before we run out of space here. Hope I've not trodden on anyone's toes!

Can we get this thread saved? I wouldn't know how but I think it might be a good point of reference for 'new' sufferers.

[hellitops]

hello everyone. Sorry to hear about all the problems, hope they all get resolved soon.

firstly, I can't remember who mentioned it but I had similar troubles with DP. He was spouting the same 'perseverance' nonsense as the HV's and did not get for a long time how bad it was, even if it wasn't all day, it felt like it! He's much better about it now though as I've made him deal with ds when he's crying and everything during feeding and bedtime.

daisy and button thanks for mentioning teething and jabs. I was starting to worry that switching to pepti 2 milk had upset him somehow, despite it pretty much being the same as pepti 1. He has a cough at the moment, which probably isn't helping, had his 3rd jabs a few days ago and has gone to the rosy cheek and pain stage of teething.

His return to fussy feeding, not settling, arching back etc all began after the jabs on tuesday but I wasn't sure the reaction to them could last this long. We also had a bit of painful wind today, for the first time since leaving the hospital weeks and weeks ago :(

I can offer hope to mum's out there. As well as the CMPI we had birthmark issues to deal with, as many here will know, but at 24 weeks he is a brilliant baby. He is trying to crawl now, everyone comments on how alert he is, he eats 3x 6oz bottles and 3 meals a day, mostly without fuss, has a snack sometimes and some water and spends hours on his mat or with me on the sofa without crying. Your LOs will get better soon

[beckie89]

Hi al im new to this and in need of advice.my Hi im new to this could realy do with somlux at three weeks,was tried on a hydo formula,made no diff,shes on sma with gaviscon wAs pt on domperidone for a few weeks,no improvement,and then ranitidine and stil nothing.i ctan deal with the sick when she burps or constantly gets hicups etc but its the pain.she wont let meburp her and then have more milk even though she wants it she screams and screams.i can only do it by giving her whole botle then burping and then she moqrd sick.shes bin put on one omeprazole a day for past week and up until today only realy had a fit with two botles.today she has constantly screamed when put down or falen asleep and woken up.ive proped her bed up and even bought reflux wedge but she wrigles and ends up flat on her back and chokes.she is v bungd up which has had for weeks i cant shift that,and gasps alot.its worying.i had a argument whith doc over geting omep liquid as the tablet doesdmt fuly disolve and trying to get it down her is awful.today shes bin the worst ever but im wondering if any of meds have iritated tummy as she pushes for ages and cant poo i help her and gve water,its horible any advice v much welcome x ine week old was diagnsd with refltrefltttwtx

[joshop]

It looks as though DS2 has reflux. Cried on and off all day today and problems during the last week. Poor mite is only 5 weeks old. DS1 had it too and it went on for two years but he was preterm & DS2 is on 50th centile.

My GP has prescribed ranitidine, domperidone and Infant Gaviscon. Latter is a bit of a nightmare to administer, especially when BF several times a night. Any suggestions of how to do it and/or would we get away with skipping it during the night feeds?

[daisylulu]

Hi everyone. I used to use this thread a LOT in my 7.5 month old DDs early days. I wanted to post a little update to give others light at the end of tunnel. It is horrendous seeing your baby suffering with one of the most basic functions of feeding. I hope you find the right solutions for your LOs soon- with the right combination of meds and/or formula there will be an improvement. Ime the hardest thing was getting my gp to take things seriously.

My DD started projectile vomiting at about 5-6 weeks. She had always been a sicky baby but this was violent. Around the same time as the projectile vomiting she also started to struggle with her feeds- crying on bottle after a few mouthfuls, seeming hungry but being in pain to eat, arching back, needing to be held, lots of wind, hiccupping, explosive watery poos (sometimes up to 8 times a day). It was horrific. Due to the projectile vomiting we got an emergency app at hospital to rule out pyloric stenosis and this is where they diagnosed 'reflux.' she was put on ranitidine and domperidone and we saw an improvement wrt feeding. Sadly after a few days the feeding issues would worsen (and the explosive bowels were never improved) so the gps kept upping her meds until she was on max dose for her weight. They also swapped her from ranitidine to omeprazole. Thanks to mn and my own research I began to wonder if she might be allergic to dairy.,...my gp poo pooed this but as I was at the end of my tether and lucky enough to have private healthcare for DD through DHs work I insisted on a referral to a specialist. We saw the wonderful Dr lindley at Gosh and that's were everything changed. Diagnosis = classic textbook case of cmpi. Gps are notorious for labelling this as 'reflux'. Lindley explained 'reflux' is often a symptom of cmpi and reflux does not cause bowel troubles.DD was initially put on a hydrolised formula - nutramigen. Although this helped DD still had loose bowels and so she was changed to neocate- this is an amino acid based formula. Once on this there was no looking back - it took about 6 weeks to get full effects and all the cows milk protein to leave DDs system. We have now fully weaned DD off domperidone and is down to a 1/4 of tablet of omperazole (you have to stop this one slowly otherwise you get acid rebound). I never thought DD could be drug free and happy. She is 7.5 months and a bundle of joy. I found her 'reflux' flared with teething and vaccinations - apparently they can both irritate the gut.

God sorry for essay but I want to share my knowledge so hopefully it helps others. Cmpi is relatively common and it is a disgrace that gps nearly always ply our babies with drugs as a first port of call rather than trialling the hypoallergenic formulas to treat the route cause (a cost issue I think- neocate is £38 for a half tin).

Good luck all on finding the right solutions.

Buttonmoon - just noticed your DS is on nutramigen. Have you tried neocate? It is a lot more expensive and Lindley said GPs will not prescribe without paed approval but it sorted out my DD when nutramigen did not....

[welshie1]

These work for mine most times, other days its a test of patience and will:

don't jiggle or rock them you only encourage the acid into the throat
make sure you wind them upright
rub gently upwards on their left side when winding (DO NOT pat the back)
mine prefers being on the shoulder but you can also just hold them upright on your lap, you dont need to pat or rub their back, the wind will come up but this is easier if they're not stressed & crying
A double dose of patience and calmness from you or partner - a set of ear plugs is useful too
Don't try too much in too short a time i.e. moving them round loads
Keep them upright for atleast 20 minutes after feed even if it in a bouncy chair
Prop up their bed/cot/basket
Gaviscon in the food is good but I agree with some of the others it can lead to constipation so try also giving alittle water to ensure baby doesn't dehydrate
Lots of love and sympathy all round

[littleginger]

My little girl was changed to cow and gate anti reflux milk at 10 weeks and there was an immediate let up in the amount she spewed. She continued to arch her back and scream but because there was no longer an excessive spewing problem I came to the conclusion that my little girl just behaved like this when she was overtired as when I soothed her in my arms she would always go to sleep.

She's now 4 months old though and I've moved her into the cot overnight in her own room. I used to just lean over and replug the dummy several times per night when she was in moses basket nxt to me. Now though when I enter her room to replug during the night (door is closed) the smell of sick is sometimes overwhelming. The first time I really panicked and checked everywhere in her cot but it was bone dry :/ I replugged the dummy and this slowly comforted her back to sleep just like it always did before.

Could this smell plus the arching of back and screams, batting bottle away and yelling but then practically biting the teat off when I offer it back be signs that there is some silent reflux going on here? :/ well I say that but we do still get some unhappy spews during the day in addition to the aforementioned symptoms

Or am I just looking for something that's not there? I do sometimes wonder if I'm just trying to diagnose my LO with something just because i hate to hear her cry. I feel like I completely lack that mothers instinct of just knowing. I don't have a clue!

[dollydolly29]

i suspected my baby suffered from silent reflux a few days after she was born as she had many of the above symptoms, an hour after eating i would hear her swallowing something back, frquent hiccups, grunting, not settling , pulling faces, arching, choking, sneezing and looking generally uncomfy!
i went to the doctors and was given infant gaviscon (which made her much worse after a day or so, so much so she startedshowing signs of sandifers) and then to the walk in centre armed with a video of her at her worst, (to be told it was ;just colic' and that we were 'overfeeding her'-idiot doctor) and given domperidone andwas told these drugs took 4-6 weeks to work and then they might not after that. worst of all was seeing my little girl in discomfort and pain! i couldnt take another night of it!
anyway my mother in law suggested homeopathy so i rung someone i knew and he suggested nux vomica. started it on monday and noticed a difference straight away! by friday her synptoms were totally gone and she was a different baby! smiling loads and chilled out! and sleeping quietly!! cant believe the doctors would give us the drugs to use for months when this worked straight away! also had her tested for cow milk intolerance (not allergy) and this showed up she was so switched her to soya formua. cant stress how much this helped us please try this first it has made us enjoy our newborn instead of having no sleep and crying all the time!

[PA123]

Thank you for posting this. Can relate to a lot of the symptoms listed - baby is 5 weeks old and heart breaking to watch her cry and arch her back, look of pain / red face- feeds small amounts VERY often. Can a GP diagnose reflux or does it need to be a Paediatrician?

[seven201]

I know this is a really old thread but it's made me feel so much better!

[seven201]

Pa123 the gp can

[Lilbeth1986]

Anybody know if there is a more recent reflux support thread?

[Reflux101]

Hi everyone,

This is my first post on mums net so I hope I’m not posting in the wrong place or anything.

I have a 6 day old baby ( so admittedly very early days), but I’m a bit concerned by the severity of his reflux symptoms and the affect they have on his sleep.. whenever he has to lie flat, even for a 30 second nappy change he becomes so distressed. He grimaced, turns red, screams and is absolutely inconsolable. This also applies to his sleep. So despite holding him upright for 40 minutes after a feed, to help the feed stay down and also help him to get into a deep sleep when we then try transferring him into his cot he wakes within 10 minutes ( again clearly in pain). Whilst he’s still asleep he starts writing around, grimacing in pain his face turns red and he makes repeated throat clearing noises ( like he is trying to clear something from his throat). We have already tilted the cot, and I have tried to burp him well after feeds.

We have been seen by a paediatrician who will now be following up our son. Nothings been prescribed yet but apparently we would start of a feed thickener in 2 weeks.

Has anyone experienced reflux that sounds like this? If you did when did it start to get better?

At the moment my husband and I are having to just take turns throughout the night in holding our son upright on our chests to keep him comfortable. I’m shattered.. if you have had a baby who couldn’t sleep in his cot / had v frequent wakings due to reflux, did it improve when your baby was old enough to roll onto their tummy and sleep that way?

Thanks for reading

[Busymumof32020]

Hi all I'm at my wit's end have an 11 week old baby.

He's been diagnosed with reflux but they reckon it's colic 2 so I tried lo on baby gaviscon no improvement it and him badly constipated.
Then back 2 docs and he's on losec tabs there was improvement but back 2 square 1 again so bad yesterday evening i had ring out of hours doc but he settled then thankfully.
Any advice is much appreciated pls should I change he's formula of heard infamil is good???

[Busymumof32020]

Hey everyone my lo has a lot of these symptoms 2 hiccups spiting up and very cross hard 2 settle had him on baby gaviscon, no improvement then he was on losec and back at docs today as still no improvement he's now on zolon so fingers crossed now. I asked about switching formula but my doc said it's tastes a lot different so gonna hold off and if no improvement he will be referred 2 paeds