CMPA/reflux

[Penguinlady19]

Hi all,
First time poster here.
I'm looking for some advice on CMPA and reflux.
Ds is 11 weeks old and has been struggling with reflux since the start. He is formula-fed due to having a tongue tie (they wouldn't cut) and being unable to supply enough breast milk to exclusively pump.
After trying Gaviscon to no avail, the paediatrician prescribed Omeprazole. This did reduce some of his symptoms.
As it did not completely fix his problems it was recommended he try nutramigen 1. It's worth noting that the doctor would not prescribe the liquid omeprazole (too expensive) and giving DS the medicine is traumatic for both of us. He screams, spits out a lot and is even causing some bottle aversion.

We started DS with the new milk on Friday and he has been worse ever since. He vomits more than ever, his reflux is worse, his daytime naps are basically non-existent, he is eating less, his poos are horrific (runny, smelly and frequent) and he just generally seems less happy.
Some symptoms have improved; he is less bloated now, he is less gassy (both ends) and he doesn't strain to poop anymore.

So, does this mean he doesn't have CMPA? Does the milk just not agree with him? I am honestly losing my marbles. It just feels like one step forward and two steps back.

His initial symptoms were: excessive crying, occasional rashes, wind, back arching, unhappiness at feed time, painful poos, vomiting, regurgitation, interrupted sleep and just generally uncomfortable.

As I mentioned, the omeprazole did help about 70% so maybe it is just reflux. I am trying to advocate for DS as much as possible, but I just really do not know what my next steps should be.
Any help/ advice would be appreciated.

My daughter has CMPA. She is exclusively breastfed so it is slightly different. Her symptoms were bloody nappies, back arching and discomfort and throwing up entire feeds, after pretty much every feed and screaming for hours on end (we had to take her to a and e a few times because it was so excessive before our diagnosis.

As soon as I cut out dairy the difference was like day an night. She was settled, no more blood, literally zero vomiting, not even spit up. The difference was clear. She became a much happier baby.

I'd hope that moving away from formula would help your ds too but it doesn't sound like it has, so I think it is possible it's not CMPA. However, I think it even says on the back of nutramigen that it causes frequent loose green stools so that does at least explain that. But if it's just pure reflux then it'll happen no matter how or what he's fed on and then it all becomes about making sure he's held upright after feeds and properly burped and farted (not
Saying you don't, just that it can be tricky!).

I hope it gets better for you soon. Those first few months are killer. Keep pushing.

I have no experience with CMPA - but a lot of experience trying to get Omeprazole into a baby!

Our DD was put onto Omeprazole at around the same age. We had the pills first, struggled with them massively so the Dr prescribed the liquid. That was absolute hell!! She went absolutely batshit over the liquid, and for some reason I licked my finger when I spilt a bit and I really am not surprised she was kicking off, it tastes awful and almost a burning sensation. Back to pills we went.

Tried lots and lots of variations, but what seems to work for us is as follows:
Give meds 1 hour after feeding, then trying to leave 30 mins after meds before the next feed
Putting 2ml of water in the syringe with the pill, let it soak for a few minutes then covering the tip of the syringe with a finger, dragging the plunger back and letting it go so that it acts as a pill crusher. Then add more water slowly repeating that action. Seems to make it dissolve a lot better.
Not sure if you use gripe water with your LO, but we ended up mixing some gripe water in with it too as our DD actually seems to like gripe water, so she accepts it a lot easier and doesn't mind taking it if it has gripe water mixed in too. (I know this probably isn't the 'done thing', it just works for us)

She's now on a very low dosage as they say to up it with their weight, but we have just been judging by the symptoms and she's not been suffering too much so we've kept the dosage lower so that if for any reason she deteriorates we have some options in terms of being able to up the dosage. I know they can get reliant on it so the lowest we can get away with the better.

Best of luck, a lot of it is just trial and error to find what works for you.

I've had 1 reflux/cmpa and another cmpa baby. I have breastfed mine so not an expert on formula but from what I know I think nutramigen 1 is a hydrolysed formula and still contains some milk proteins so some babies will still react. You may need an amino acid based formula. Also I think hydrolysed formula can be quite thin, some people find they need a thickener otherwise it makes the reflux worse.

As I say, not a formula expert. But if you speak to your gp or dietician they will be able to prescribe something else if this not working.

Thanks for all of the advice. I am inclined to think it is just reflux. However, I would have thought after having the omeprazole and keeping upright after a feed, paced feeding and all the other suggestions it wouldn't still be an issue.
The GP prescribed some cartel, which has at least returned the reflux to where is was before. His poos have returned to a normal colour, and are not excessively runny now the thickener has been added to his milk.
I am due to speak to the paediatrician in a couple of weeks, so I will at least know what the next steps should be.

I'll give the gripe water a go and see if that helps. I'll try anything at this point.

I might discuss early weaning and see if that is an option. Even if it is just reflux, I've heard this can help.

It’s so nice to know there are always people to ask for advice, in the middle of the night. I'm 12 weeks in and I still don't know what I'm doing. I keep waiting for a lightbulb moment when I just know what's happening. Maybe by the time he is 18, I’ll have at least half of a clue.