Reflux & CMPA HELP - baby still sick!!

[LadyH1986]

Hello hoping someone may be able to advise...

DD now 23 weeks, on SMA Althera for suspected CMPA, and 5mg daily omeprazole for reflux.

Whilst the omeprazole has helped to a degree (she no longer screams during a feed...) SOMETHING is still making her regurgitate a lot. I should also add that I think she’s more sick now on althera but doesn’t make sense to me. I use carobel to thicken....

Up until about 3 months she rarely regurgitated at all (apart from a couple of weeks as a newborn)

We were late diagnosed with CMPA and reflux medication, which also led to a feeding aversion which were still recovering from. She now will have 3-4oz every 3 hours, and whilst gaining weight - is on the 2-9th percentile.

We’ve been working alongside a peadiatrician, but before I go back AGAIN, I wondered if anyone had similar experience and can help me reduce her sick!

Oh, I’m sorry you’re going through that - I know how difficult it is, and frustrating it feels when you’re not listened to properly...

So very similar symptoms actually. She used to scream through feeds, arching back, constantly pulling legs up and generally thrashing about. The sick actually came MUCH later, and she’s always had quite watery poos since being on these hydrolysed milks (she was on Comfort before so it’s always been green and smelly 😬)

It took me really pushing the GP, support from my HV who suspected silent reflux and that she needed omeprazole... and once that was prescribed we had a paediatrician referral. It’s the paed who’s been helping us since and finally feeling heard, just a shame she’s been uncomfortable for 5 months and I’ve known all along that something wasn’t right...

How old is your little? Are they on any kind of formula currrntly?

This is so helpful, thankyou! A few threads I've read have mentioned supportive health visitors so I think that will be my next port of call. She's just turned six months, and is currently EBF, so I could just decide myself to cut out dairy and see what happens - I will do that but have heard it's better to do with GP oversight, and I'm going back to work in three months so was planning to start weaning to formula soon. Tbf, some of the symptoms only appeared recently, which perhaps suggests not CMPA, but then I have been drinking more milk recently (too much Costa!) And we are also dealing with teething (and rubbish sleep!) and struggling to unpick the causes of different episodes of fussing (I think it was you mentioned that, or another thread on CMPA I read recently)

@LadyH1986 no, you shouldn't need a thickener with an AA formula. The only reason you need it with a non AA is that more solid milk in the stomach us harder to vomit back up so reduces reflux etc. As the milk protein is the cause of the vomiting reaction the vomiting is removed so a thickener isnt needed.
Neocate has a very different tastes and smell to other formulas. You may well need to half and half your current milk with it until your baby gets used to it then gradually increase the neocate proportions.

Make sure you stop and wind you baby halfway through a bottle by tilting them diagonally across your body to your right. Repeat at the end. Dont pat the baby's back as this disperses the bubles and makes them harder to bring up meaning they are more likely to be sick and in pain. Keep your baby upright for a while after a feed if possible too.

@Etherealhedgehog your baby foes have dogns of CMPA. A rash is not necessarily a sign. Incessant cryingn ecplisice diarrhoean vomitingn voluckt pain with legs ip yo the abomen, back arching, lack of sleep etc are all signs. Its unusual for there uo be bo evidence from the start though. Teething causes watery diarrhoea too(often acidic), sickness and fussiness also that could explain it if thetehas Been no previous sign. Try reducing your milk intake for just a couple of weeks and start weaning with veg anyway (do one at a time). If your baby has a significant wheeze id definitely be insisting youf gp takes this seriously. CMPA can cause respiratory symptoms and can be dangerous. You should be referred to an allergist for blood tests if there is significant wheezing.

Definitely get the omperazole dose checked it seems low. The lowest dose is 0.7mg/kg and it can go up to 3mg/kg for an idea of dosing. Our gp was only adjusting for her weight and not moving her up the dosing. It was only when we saw the paediatrician it got put up to 3 mg /kg and we saw an improvement.
We are ebf but have had to cut out dairy, soya, eggs, coconut, tomato, red pepper, beef and fish and we still have a similar list of maybe foods. We gave 1 oz of hypoallergenic formula and had the worse night ever - it turns out the formula contains coconut!
Our symptoms are inconsolable crying, back arching, reflux (mostly silent), being unable to put her down, refusing to lie down (sitting up nappy changes are fun!), not sleeping, feeding refusal and only since we have got on top of most of the allergies do we get a rash on her face and some times her legs.
As well as high dose omperazole we are giving gaviscon which helps reduce the reflux I'm not sure how this works for formula fed babies. We did try carobel as an alternative to avoid gaviscon constipation but she reacts to the carobel.

@LadyH1986 has the AAmilk helped at all?

Still waiting for the milk I’m afraid! The long weekend has put us back, but hoping to collect tomorrow (fingers crossed)

Watching her really closely, she still seems to be experiencing discomfort in her bowels and tummy, crunching legs a lot for wind etc

Let’s hope the milk is what we need... x

Here's hoping it works. Do let me know x

Thanks! STILL not sorted. It’s such a joke... she’s almost 6 months old now and my first trip to the GP was at 8 days...

I’m not even sure what it is anymore.‘obviously hoping the new milk helps, but not convinced the omeprazole is doing anything. She’s still arching her back, really windy and often looks like she’s doing bridges throwing her bum in the air!! She’s now pushing the bottle away often, it’s such a painful experience - averaging 500 maybe 600ml a day of milk. :(

Just doing bedtime which is so stressful: literally thrashing about in my arms grunting and squirming around, i had hoped this would all get easier but it just isn’t

So are upu on the new milk or not now?

Feel free to pm me of you need an ear!