Cmpa and reflux

[Pep12]

My daughter has now been diagnosed with CMPA and reflux. Shes 10 weeks old and has been put on pepti and omeprozole. She is still screaming through most, if not all feeds and im really struggling to get milk down her. While feeding her I can feel and hear her tummy gurgle, she has a few sips or an oz or so and then arches and screams. She gets really painful wind. Im just wondering if anyone else has experienced this with cmpa and reflux, and any tips on what else I can do before I lose the plot 🤦🏼‍♀️ x

Hi, my son had cmpa until he was 2, thankfully outgrown it now. Pepti still has broken down milk in it, you may need an amino acid based one such as neocate. Also possibly try carobel as a thickener, but they do say to give each milk 6 weeks to work. . I know its all really hard, I remember the constant screaming!

Also, theres a great group on Facebook for support, Main group CMPA support

My baby is 4 months old now but she was diagnosed with a cow milk protein allergy and it truly took a few weeks for the milk to leave her system.
What I did find though was that her poo changed to "normal" very quickly and the screaming reduced day by day until a few weeks later where I realised she hadn't screamed in a while and was reduced to screaming when she had just wind.
3/6 of my nct group had CMPA weirdly and I know everyone had issues with formula except when being given Neonate. Apparently it's around £50 per tub so doctors are very reluctant to prescribe it. If your baby has the intolerance it will get a lot better, you just have to hold out. Do also make sure you're not giving baby any soy, I was told by the hospital dietician that 30-50% of babies with a milk allergy/ intolerance also have an intolerance to soy (which is in everything...) so if you bf you'll have to be very careful.
I remember one day having a 50p size dollop if mayonnaise (not realising it had milk in it) and then breastfeeding the little one, only to find it sent her loopy for 3 days x

Shes been on the pepti about 3 weeks now, the only improvement being her skin clearing up but she's still so uncomfortable. I've got another appointment in December for her and he did say if thats milks not working we can look at others. But hopefully after 6 weeks it might start to help. I think with it being so watery as well its making the reflux worse so I will ask about giving carobel too. Thank you x

It take a good few weeks for the milk to get out of their system and then for the inflammation to die down unfortunately. I feel for you, I remember those days of incessant screaming all day and all night. It's really tough.

We had neocate, lansoprazole & cetirizine. Added carobel a couple of weeks later. Weaning at 17 weeks helped a bit, but the real turning point was steriods (sadly). It was the only thing that got the inflammation under control in the end.

I used to feed every 2 hrs around the clock, but only small amounts and gradually built up to larger feeds, but DD was premature and very under weight by that point (had spent weeks throwing everything up + shocking dirty nappies). Feeding her upright (not laid down as they would be breast fed) helped as did keeping her upright after feeds. I also propped the cot head up by about 7 inches so she was never lying flat. DD seemed most comforted by movement, so I used to just walk up and down the landing holding her upright against me. I know this sounds insane, but my Mum bought me a CD of music called 'baby cello' it was the most chilled music you'll ever hear. I used to play it low whilst walking DD back and forth - not sure if it was in my head but I swear it helped!

If your DD is still throwing up a lot, bear in mind she's hungry / thirsty and likely guzzles which doesn't help with wind. Not sure if you can get 'slow' teats? I'm pretty sure I got some which didn't 'flow' so easy so she had to take the feed a bit slower if that makes sense?

If your DD has been diagnosed with CMPA (vs a dairy intolerance) please steer clear of soya and anything that comes out of a nipple (goat etc) they all have similar proteins to dairy and can cause the same reaction.

My DD also had skin issues, and I found this really helpful in soothing the soreness: www.oilatum.co.uk/main/index.html

It's really tough, but it gets easier I promise x x

Oh bless her. Yes I've gone to a smaller teat as she does guzzle it. Yea she's the same she constantly has to be moving and upright. I feel so sorry for her and my other daughter as shes not getting as much attention because I'm constantly having to comfort the baby. Thank you ill have a look at that. Hopefully things will start to get better soon x

Can I ask what skin issues you all experienced with your babies? I'm sure my 10 wk old has cmpa, he also has cradle cap which I've been treating and just been prescribed an anti fungal cream for behind his ears. Any skin folds seem to get quite sore very quickly which I never had with my other son. His chest skin is very dry too.

My daughter had very dry skin, on her face particularly and little red pimple like spots on her face and tummy which would come up worse after feeds. When she was face down on me she'd rub her face as though it was itchy.xx

Yes my son had those all over his face and chest but they've since gone from about 4 wks old and just left with dry skin but not the red pimply bits. He does the head running thing too

We've now been changed from pepti 1 to nutramigen, shes worse than she was on the pepti! Has anyone else moved from pepti to nutramigen and it helped?

Surely with it still having broken down milk proteins in, it will just be the same as the pepti?

I would try Carobel, and we had to feed my youngest sat in her bouncy chair with it very upright, otherwise she would still scream. I’d ask for a referral to the regional centre with the gastro specialists if I were you.

ds (2) still has cmpa and was had bad reflux basicslly until he started solids at 6 months. I found omeprazole worked for him but ranitidine for DD
Breast fed so had to give up lovely lovely cheese

It was really tough but it does get better eventually ...

Hi OP. So sorry to hear you're going through this. My DS was the same and it's so exhausting.

He had grown out of it at 7 months luckily. But he had Similac Alimentum formula prescribed by the doctor and 5ml omeprazole for the reflux. I used Dr Brown bottles too.
Neuners Baby Tea worked wonders. Just a teaspoon or two really soothed his stomach. You can buy it from Amazon.

Yes shes on omeprozole which seems to help the reflux but gets really bad wind through feeding and after. Would thickening with carobel help wind or is it worth trying an amino acid based formula 🤷🏼‍♀️ GP isn't much help and got another few weeks until pead app

I would try the carobel first. The amino acid formulas taste even worse than the Nutramigen type, so she might not take to it. Although omeprazole did help my DC and at one time she was on that and ranitidine (that’s withdrawn now), she’s 2 now and the thing that’s made the biggest difference has been Domperidone, they don’t like to give it though and she had to have an ECG first.

I've got a GP phonecall this afternoon. Shes now got diarrhea which smells acidic and is throwing up which she only usually spits a bit up 😩

I hope it goes well for you. It’s awful when they’re in pain and discomfort and you don’t know what to do for the best. I found the Specialist Feeding Health Visitor was a good support and it was her who diagnosed my DC with CMPI. So that might be another option if the GP isn’t helpful.

We had the same switch made and like you it made everything worse. The thing that has helped to settle it was being put on neocate with gaviscon and omeprazole (it’s not perfect now but SO much better) ask the gp for it. Ours was reluctant to prescribe it until we saw a paediatrician, the appointment got cancelled so she caved and prescribed it. It was a total game changer for us.

I would ask for neocate

It has no milk in it at all

We got it for dd from a paediatrician who also said it's best to use dr browns bottles with it and fairy platinum was the o my washing up liquid that cleaned the bottles properly as it's very hard to wash off the bottles

You could also ask whether it's appropriate to speak to a paediatrician and dietician

With ds I argued that he was cmpa. Because they gave other formulas and didn't 'work' took 6m of arguing. Of course it was lockdown so no one would see him. He had watery poo and his skin was so sore it was bleeding!
I rang gp for the billionth time and said right he needs something!
So gave wysoy as was 6m (although tin says from birth)
He started the Thursday. By the Tuesday his skin was clear, no angry red. No bleeding. He still gets dry bits occasionally.
He's also not had a single upset tummy since. That was 4m ago.

He had allergy testing in Dec. As dd was egg and slight peanut allergy.

We thibk ds may also be wheat as he had a rusk and his skin was just awful within 20 min.

This was his skin before hope pics attach. I'll find the other one for after

We've got a video paediatric app on 17th December but I vant leave her like this much longer. It was my HV that got things going with the GP for a referral shes been really helpful but GP not so much. I ended up going to a&e 3 weeks ago as she wasn't feeding at all and they diagnosed CMPA and reflux. Im going to ask about an amino acid milk. My first was a fussy feeder but not like this, and as soon as she weaned she was fine. X