Need advice with CMPA baby

[susiecinnamon]

We have been challenging my 5.5 month old daughters CMPA by gradually increasing the amount of regular formula in her prescription milk over the last week. As she was showing no symptoms we have over the past two days switched entirely to normal formula for all feeds.

I'm really struggling to tell if she's reacting or not. She's not shown discomfort signs like tummy ache but she has had some runny nappies (possibly expected due to the change). No mucus though.

She is very rashy on her legs, she has had dry skin/eczema there before though so it might be that. At the beginning her main symptoms were mucus nappies and a bad raised rash on her face and neck. We haven't seen that yet.

So if you went through this with your baby were the signs that the challenge failed really obvious? I'm really not sure whether to continue or not especially because of the skin on her legs. But I don't want to give up too early and ideally don't want her to have CMPA. Advice very much appreciated x

Hopeful bump

Sounds like she is reacting again. It can take a while for the dairy to build up again in their system. Maybe you went to full bottles of normal formula too soon.

No, ideally of course you don't want her to have CMPA. But if she has it, she has it, and giving her formula that doesn't agree with her won't change that.

My first son had CMPA and was on similac alimentum, which taste and smelled like absolute shit. But it was necessary. We tried the milk ladder a few times but never with formula, only with actual dairy products. He failed a few times but eventually we completed it when he was 2 years old. Personally, the formula never bothered me. He was still getting what he needed from it and if there was even the smallest chance that he would react to dairy, it wasn't worth making him uncomfortable just because I didn't want him to have to drink the stinky milk.

Personally, if you're not sure, I'd go back to the hydrolysed milk (or were you on neocate?) and if the symptoms go away then you know that's what was causing the rash. You can then reintroduce again and go from there. The only way to know with delayed symptom CMPA is to reintroduce and see whether systems return or not. If it was me, (and it was back then) I wouldn't risk it. It's not fair on your baby.

Is there a reason you have introduced dairy again? My CMPA baby was 12 months before we started the milk-ladder and it was v v gradual. Have you been given a plan to follow by a dietician?

Same here (but for CMPI).

I’m a little confused by what you are doing. Challenging would normally involve giving a full bottle of normal milk and a gradual introduction is the milk ladder but you need to be dairy free for at least 6 months first for the ladder. Who has suggested this to you?

Another one here for being advised by the paediatric dietician to start the milk ladder at 12 months and not before (and then as others have said, reintroduction will be a very gradual process). I would suggest seeking medical advice before reintroducing any dairy.

The dietician has advised me to do this now, before we start weaning. I haven't just done this off my own back! And the advice was to add a scoop at a time of normal formula to each bottle until gradually you are up to a full bottle of normal formula. If there are no symptoms at this point (which there weren't) they advised all feeds should be switched to normal formula. I also thought it seemed like a big switch very soon but that was the advice I was given.

If her symptoms were really obvious it would be easier and I would absolutely switch back to Nutramigen immediately but I don't want to be too hasty. There are a few symptoms but nothing massively obvious, they could be other things. It's really hard to know what to do for the best.

Ok well if you're actually asking for advice then my advice would be to switch back to Nutramigen and see if the rash goes away. If it doesn't then you know it wasn't the milk causing it so you can go back to normal formula. If it does go away, that answers it for you.

Although I've got a funny feeling you're not really asking for advice. You're asking for people to tell you that you've done the right thing and to stick with normal formula. But sorry, I cant tell you that.

@whereareyounoww I have no preference either way. In fact the Nutramigen is a lot easier and more convenient to make so for that reason it's better for her to be on that.

The reason I'm asking is because I don't want to be too hasty. I want to give the regular formula a fair chance so we know for sure. I don't like all this chopping and changing. But obviously if its upsetting her in any way I would immediately stop. I'm asking because her symptoms are so nondescript it's hard to make a decision. I want to do right by her that's all.

How many days have you been doing normal formula now without mixing with nutramigen?

I know we never did the milk reintroduction with DD because she got diagnosed late. But we've had a couple of slip ups and her reactions have changed. Projectile vomiting was the main one when she was a baby along with bad gas / knees up. Now if she had milk she'd complain of a sore tummy and feeling sick (it's actually acid coming up). She's allergic to soya too and that one causes immediate loose poo followed by awful reflux, dry patches on her belly then acid burnt bum.

Are you a member of the cmpa main group on Facebook? Really helpful for these types of things

Today will be the second day of all feeds back to normal formula. No obvious symptoms other than the rash which could be her eczema flaring. Her nappies are loose but not mucousy. If she were clearly in distress, being sick, coming out in horrific rashes like she was in the first place then it would be obvious that I need to change back. But the symptoms (if they are being caused by the milk) are quite subtle so I'm not sure if I should carry on or stop.

Eczema is a symptom. I would go back to dairy free formula and wait until eczema is cleared (you may need medication).
Join the CMPA support main group on Facebook as there are tonnes of people with experience and you generally get good advice.

Wr had to do the challenge with our baby when he was 5.5 months. I think a lot of places these days want it confirmed so you don’t unnecessarily exclude a whole food group when weaning and also the prescription milk is so expensive the doctors want to make sure they have it in the first place.
we had to do it the same as you and by one day on full formula it was obvious (we suspected after the day with just the one full bottle too but wanted to be sure). He was constantly crying from tummy discomfort and wind. His nappies become explosive again and the rash on his face starting coming back so we knew he definitely had cmpa.
However, our baby was on neocate so he did need the fully broken down formula to be ok so it’s likely he reacted quicker to the milk than your little one.
we were told by the infant feeding team some parents go the whole challenge and think it’s fine and it’s not until a couple weeks later when the milk has built up that they see symptoms again and that’s ok if that happens and they need to go back onto the special formula.

@Pizzaandsushi thanks that's helpful to know. I guess if there is any doubt it's best to be safe and go back to Nutramigen. I suppose I just wanted to feel like I'd given the challenge a fair chance.

It can take up to 72 hours for a delayed reaction. I'd give it to tomorrow and see but eczema is a sign on its own of a reaction. Sometimes it's the only reaction little ones have. And sorry tmi how loose is loose? Like full blown water or kind of like wet sand loose? Just either of those would also be a fail for my DD to show she'd had a reaction x

Yes very liquidy which in itself didn't worry me too much. I expected it with the change. But alongside the rash too it is looking like she might be reacting. I will give it tomorrow to be sure. She doesn't appear to be in any discomfort so that's a good thing.

Yes we felt the same as well. After the challenge when we spoke to the infant feeding team, she did ask why we went the full day if we suspected the day before but like you said, it’s really hard to tell whether any symptoms and discomfort are the result of cmpa or something else like teething, immunisations, a cold, bad sleep etc (especially if you have a baby that isn’t the most placid to begin with like us 😂) and we really wanted to make sure not because we were in denial about him having it but because we didn’t want him to have to be dairy free unnecessarily. In fact like with Nutramigen, Neocate is much easier to prepare than standard formula, particularly when out and about, so if anything keeping him on prescription formula would have (and now with the confirmation has) made our life easier.

@Pizzaandsushi yeah that's exactly it. I don't want her missing out on lots of food unnecessarily. Obviously if she does have an allergy we will work round it but I just want to be sure iyswim. As I said it would almost be easier if there were obvious symptoms but right now there isn't. The eczema on her legs was there already, it just looks a bit more red and raised now. In herself she seems fine. Very tricky to decipher and really feels like you're just left on your own to make these important decisions.

When I had my dietitian appointment, they said when starting the milk ladder there may be some mild symptoms to begin with. If it's a slight eczema flare up, looser poos and no real obvious discomfort, then I would continue with one scoop of normal formula for now and look to increase when symptoms settle or you feel comfortable doing so. Obvious symptoms would be mucusy or bloody poos, bad rash or eczema flare up and obvious discomfort, with these I would stop.