CMPA/reflux nightmare

[Minnie987]

Hi all

My 5 month old has suffered with various digestive issues since birth which seems to have got worse since I recently started solely formula feeding him (symptoms like reflux, arches back with pain for up to 2 hours after feeds, will only drink about 80mls unless upright in baby carrier, indigested poo, diarrhoea etc). These issues also mean he only sleeps 20 minutes at a time before waking writhing around in pain, he won’t sleep flat which means I have to carry him around about 6 hours a day and even then he’s chronically overtired because he just can’t sleep it seems due to the pain/reflux issues. It’s utterly exhausting and carrying him all the time has lead to my muscular/joint pain getting much worse, but the worst thing by far is seeing him in pain so often. He also suffers with eczema, sneezes, coughs frequently and gets a blotchy rash when he feeds. I was told it was likely colic/reflux and that he’d grow out of it, partly because he was born 5 weeks early.

GP has prescribed Nutrimigen recently for suspected CMPA which he’s been on for a week. Initially we thought it helped as his poo now looks digested (though green and runny but apparently this is normal for nutrimigen!), his eczema seemed a little better and he napped for about an hour in his cot (a first!!) however it seems we’re back to square one as all the same symptoms are still present (crying and in pain for a long time after feeds, gassy, not sleeping, reflux etc etc).

I know the advice is to wait at least 2-4 weeks to see a change but there are times it feels intolerable seeing him in so much pain and having very little and sometimes no time to rest (him nor me!!)

I’m wondering has anyone else been through similar? And any words of wisdom you can offer? i will try to ride out the next week persevering but is it worth asking to try an amino acid formula?

Thanks so much in advance

My DS has CMPA and reflux. He's mainly BF but also on nutramigen. It's tough but a week isn't long enough to try it, can take a while for the gut to heal. Were you given anything for the reflux? DS has gaviscon. You have all my sympathy and I hope you see improvements soon.

Which nutramigen is it? Is it Puramino. That's the one you need. It should help quickly. There will then be the slight "learning" phase for your baby that he can now be put down and doesnt need yo be held which us always a challenge!
As long as you have an amnio acid formula not an EHF you should notice the difference quickly from experience

Sorry I've just seen the bit I listed kn upur OP!
If you've had an EH formula you do tend to get a slight improvement right at the beginning but in CMPA this doesnt last. The stlypmptoms come straight back. Ask for an AA formula like nutramigen Puramino, you may have a local prescribing dietician who your gp will refer you to for more expert help and advice. You need an amnio acid formula. Extensively hydrolysed formulas dont work for CMPA sufferers as the body can still recognise the protein chain structures and react to them. I feel for you, my child was incredibly credibly ill with CMPA. Puramino changed her and everyone around her's lives.

Thank you bluebell - so sorry your LO has suffered too. Yes was prescribed gaviscon which hasn’t made any difference from what I can see. Fingers crossed there might be an improvement soon but not holding out much hope! He’s screamed most of the day unless I’ve held him and sang to him, screams with pain even if I lie him flat to change his nappy 🤦🏼‍♀️

Thanks GlamGirraffe, really helpful, and again so sorry your baby suffered so much. Must have been truly horrendous at times and so pleased the Puramino made such a difference. That’s interesting to know about the EH formula - do they know why there’s often a slight improvement before it gets worse again? Definitely seems to be the pattern my sons following. To be honest he seems worse if anything with the nutramigen, more pain, horrendous nappy rash etc, although in my exhausted state maybe it just seems worse!! Yes I feel fortunate that he’s been referred to a dietician who hopefully will be able to help. Was your GP able to prescribe the amino acid formula or does this have to be done by a specialist do you know?

And no sorry glamgirraffe it’s nutramigen LGG so just EH

EHF does work for some babies with CMPA which is why it's tried first. The protein is broken down, some babies still react to the broken down formula so they need an amino acid formula. Depending on your area depends whether your GP can prescribe AA or whether it has to be a paediatran or dietitian.
For my DS he reacted the first EHF we tried (SMA Althera) which caused a worse reaction than BM when I'd eaten dairy. There are 2 main proteins in milk (whey and casein) Althera has hydrolysed whey in it and nutramigen LGG has hydrolysed casein in. I was skeptical when another EHF was prescribed but it works for my DS.

There is a Facebook group called CMPA support which is good and it's fairly clear on there that difficult milks suit different babies.

Great that’s so helpful to know and reassuring that there are different kinds of formula that could help. Perhaps the whey would suit my little one better then, got everything crossed we can get it sorted soon