Neocate success stories? CMPA parents.

[peonies1988]

Long story - baby diagnosed with CMPA around 3 weeks old. Given nutramigen and some improvement but not a lot. GP then gave gaviscon which was the devil and made her horrifically constipated; lactulose didn’t seem to help much either. A different GP then says “probably not CMPA just silent reflux, here is omeprazole” and said to go back on normal formula. Fast forward 4 days and my now six week old is howling in pain, tears flooding her tiny face for around 16 hours a day and that’s no exaggeration. Eventually end up in A&E and see doctor who spent years in allergy clinic and says he has “no doubt” it’s CMPA. We also see an amazing dietician who seconds the diagnosis and we get neocate. I stress I asked my GP for this weeks ago and was told no.

So we’re 48 hours into neocate and she’s not screaming for 16 hours a day but she’s still having long crying episodes and isn’t really settled i.e. napping for anything longer than 10 mins at a time before crying again.

Please tell me it gets better, I don’t know how much longer I can cope. I also have a very “spirited” 2.5 year old and I’m at my wits end. Have continued on the omeprazole by the way as don’t want to change lots at once - paediatrician and dietician agreed this was best too.

Did neocate help your CMPA baby?

My little one has CMPA and it’s awful to go through let alone what you’ve been through. I’m sending big hugs because undiagnosed it really does a number on you mentally and physically. My baby is on a different formula to you but it can take 10 days for you to see an improvement. Baby’s gut will still be really inflamed, especially after constant exposure to dairy but you’re on the right path if it is CMPA :). I felt the same as you, 2 or 3 days in with the new formula I felt like nothing was better and started to worry it was something else but I would say 4 days after stopping I saw a massive difference and now she is a completely different baby :).

In relation to neocate, I questioned why I wasn’t prescribed this over the formula I have now and the GP said it can be unpalatable for some babies but some babies do need it. It could be worth (once things are settled) asking to try a different formula but obviously go on their advice

Thanks so much @PollyPocket245 and I’m so glad your little one is much improved. It’s honestly been the hardest time. I had PND to the point of ending up in a psychiatric hospital with my first baby and this, if anything, has genuinely been harder. You feel so helpless and you almost gaslight yourself into thinking things are fine and you’re being neurotic or over the top. And the constant crying just frays you’re nerves. I’m hoping beyond hope we start to get somewhere soon. Thank you again. Out of curiosity, what formula is your little one on? x

@peonies1988 aww lovely I totally get it. The amount of times I sat there crying my eyes out trying to convince myself the problem was me and I was overreacting while she was screaming in pain. It’s horrible, all you want to do is help. It will get better, I found it helpful to say out loud over and over ‘it will pass’ half to baby and half to myself .
I have Aptamill pepti 1, from what I understand aptamil and nutramigen still have traces of cows milk in the form of whey but it’s broken down to reduce the chance of allergic reaction. I think it’s the whey that makes it easier to drink (smells a bit like horlicks!) Some babies (and yours might be one) still react to these formulas so they need neocate. Maybe once all is settled you could see if it’s worth trying a different one if you suspect it’s the taste but obviously allergies can be really serious so always speak to the Gp :). Please double check what I’m saying too, lots of speaking to people and 3am google searches here .
Did you or your partner have CMPA as babies? I was told this increases the likelihood of your baby having it. I had it as a baby but grew out of it so hopefully it won’t last forever xxx

Thank you so much @PollyPocket245 I honestly wouldn’t wish these last seven weeks on my worst enemy so thanks for making me feel like I’m not crazy! Well neither of us had it diagnosed but I was a very colicky baby and apparently cried relentlessly until about 2.5 years old. My husband also used to get phantom stomach cramps as a very small child and was constantly in hospital! She’s been asleep on me for nearly two hours which I know sounds like nothing but is a vast improvement xxx

We did every milk in the book with our boy. We ended up on nanny care. It changed his life. And ours! Did you try bringing baby to the osteopath?
I really feel for you we had days weeks and months of screams. I will never forget it
It does get better though I promise x

@peonies1988
Oh that sounds like a huge victory! 2 hours you both really need! When things settle, do make sure you speak to someone like your HV or GP, even if you don’t think you need to. You’ve been through a lot. It surprised me after things got better I stopped sleeping and waking with stabbing anxiety constantly on tenterhooks, even if you think you’re okay look after future you xxx

Thanks @PollyPocket245 that’s really nice of you to consider. My anxiety really is through the roof so I definitely will speak to them. Thanks again and hope your little one keeps well too xxx

Thanks @Babysharksmom - yes we actually did try nanny care but CMPA babies can’t have that either, she reached quite badly to it. We also tried osteopathy and saw no difference but I know it can help a lot of babies xx

My DD had terrible reflux although it turned out to be CMP intolerance rather than allergy. We had neocate plus ranitidine, which was the advised treatment at the time. It was mainly the ranitidine that helped initially as we didn't get the neocate until a bit later. She was still sick, but it didn't seem to be painful.

The neocate reduced the sickness but one thing I remember is that initially it seemed to make it worse because it was so runny and I hadn't thickened it enough. Have you been using a thickener? We had Carobel and I had to make it really really thick to stay down. We had those variflow teats with the y shaped opening so she could get it out of the bottle.

It is a very stressful time but keep persisting with the paediatrician until you get a treatment that works for you.

Thanks @MarjorytheTrashHeap and so sorry to hear about what you went through. The dietician recommended we do the neocate for a couple of weeks first before issuing the carobel but we have been prescribed it. She’s actually not sick a lot, she has a lot of positing but nothing more than normal baby stuff; I think the reflux is mainly silent as it was with my first so not sure whether carobel helps? Xx

Just wondering did your LO settle on neocate?