To ask what you would do? (re CMPA baby)

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4 and a half month old DS has suspected cmpa. I say suspected as we've yet to see a paediatrician for a formal diagnosis, although GP is confident this is the issue.

Background is that he started on sma formula (I was unable to breastfeed) and always had slightly dry skin. When he was 2 months old he started getting very dry, sore patches on his knees, elbows and shoulders. He was always very irritable, crying more than normal and had started to have diarrhea twice a day. GP prescribed Aptamil pepti. DS wouldn't take it, even mixing it with sma, and 4 days in was dehydrated so we went back to sma. GP said to try the soya sma. We did but his skin worsened, so GP prescribed nutramigen. DS was 3 months at this point. He took the nutramigen fine but his skin worsened again and was cracked and bleeding in places. He also had diarrhea 6-10 times a day. GP was reluctant to change formula again as nutramigen works for "most" babies. She put in a referral to see a pediatrician and a dermatologist at the children's hospital. In the meantime DS skin is dry and cracked in most places on his body, the bleeding bits are on his chin and neck and elbows.
An out of hours doctor recommended neocate formula so I went back to my GP and asked for it. She was very reluctant but prescribed 4 tins in the end. Has only been on a full bottle of it for 2 days so obviously I have no idea if it's helping yet. He is still having diarrhea 6 times a day at least. (His stools have been sampled but there's no underlying infection or anything).

I also got an appointment for a peadiatrician through for the end of this month. The dermatology department then called with a cancellation so my appointment for them is this week.

This bring me to now. The past few days DS has been miserable. The skin on his face is so dry and broken, it's bleeding and weepy and he just wants to scratch at it all the time. The minute he is undressed he just grabs at his chest and legs and screams. He's been sleeping about 8 hours in a 24 hour period for the past 3 days. GP wants me to hang in there until my appointment but I honestly don't know if I can take another night of this. The dermatologist isn't exactly going to wave a magic wand and make him better, plus I still need to wait to see the paediatrician. I just want someone to see DS and assess him properly.

Should add we've had zerobase, epaderm, hydromol and zeroderm moisturisers. None of them have worked. Hydromol and oilatum for the bath. Also had hydrocortisone, eumovate and fucidin for the sore patches but again they've not worked.

I'm just at my wits end and wondering if taking him to A&E is worth a shot
Has anyone dealt with this with their babies? What would you do if you were me?

if you think he needs to be seen take him, babies go downhill fast, or call your health line for real advice from a medical type person

not sure i i know what that is, milk allergy?
have you tried a goats milk formula?
Ive not had experience in cmpa, so just throwing the idea out as we used it for our daughter, she never slept, always projectile vomiting, always screaming in pain, drawing her legs up and never settled, that was on breast milk ans as im lactose intolerant we wondered if it was my milk she couldnt have... doctors told me that was daft as i didnt eat or drink milk products... i decided he was daft and we got a tin of goats milk and the change was from the first bottle, a totally different baby, and she slept!!!!
as you are under a doctors care maybe ask if it would be something that could help .....

When my son was diagnosed with CMPA we were told to expect it to take 6wks for dairy free to make a difference. It definitely took 2-3 weeks before we saw any improvement. It’s horrible but I think you need to give the neocate a chance to work.

OP go back to hour GP - or better yet a different GP and tell them that your baby needs to try hypoallergenic formula NOW. They hate prescribing it because it's expensive but they can.

It may not help but it may work miracles. And changing now will make no difference to any allergy testing you do later.

Is it a paediatric allergy specialist you are seeing, or just a paediatrian? If the latter, be wary of anyone who just wants to treat the condition if the eczema rather than looking for the cause. Insist on allergy testing.

I had severe eczema til age 9 due to a CMPA. Ds1 was also allegic but "luckily" his reaction was more extreme (hives, diarrhoea and vomiting) so we were fast-tracked.

Goats milk isn’t recommended for CMPA as the proteins are similar and the same with soya. How much are you moisturising as you cannot do this enough. Moisturise moisturise moisturise, he can also have piriton at night to help sleep but only the GP can prescribe it at this age. Also use the steroids and emollients at separate times with at least half an hour gap. I don’t know if you’ve been doing this or been told to. My DS had a similar story and after seeing the dermatologist his skin cleared up beautifully with the right creams and Neocate. But it was a long battle.

You've got neocate now haven't you, that's completely synthetic.

My DD has CMPA but she was sick more than eczema-y. She was on Neocate too, and it made the world of difference, pretty quickly for her. Much the same as you're experience - GP was reluctant until an A&E doctor said we should have it (we were there for something completely different, a nasty bumped head!)

The the eczema I think you have to look at it as a separate problem in that It won't heal simply because the milk has changed -it's there now, so needs to be treated separately. Like Thatsnotniceroger said.

It will take time - if he has an allergy his inside will be irritated so that takes time to settle. Hopefully the neocate will do the trick in time.

Thank you everyone. As far as I'm aware it is just a peadiatrician we are seeing. The GP did say they were unlikely to test for allergies and that they'll just go by the symptoms...

I'm putting on moisturiser every nappy change so anywhere from 6-10 times a day. Steroids are used morning and night but they just haven't made a difference. The hydrocortisone helped a bit but then had to stop using it and it went back to the way it was! No one has mentioned piriton so I will call the GP again and ask for that.

I feel so clueless about it all.

Why did you have to stop using it? You use it until the inflammation clears up. We had eumovate for DS’s body and it was amazing stuff but obviously every child is different. It used to break my heart seeing DS so sore. Allergy testing doesn’t always show up positive in small babies. Ours didn’t but because DS was so symptomatic he was told he had a CMPA anyway by the allergy consultant.

ThatsNotNiceRoger I was told to only use it for 5-7 days. She said that for all of the steroid creams.

Oh OP that sounds awful.

In my experience GPS/HV know fuck all about CMPA. The only person I saw with really good advice/experience was out paediatric dietician. Probably won’t test of allergies as skin prick tests are very unreliable in younger children. With the skin being so bad it sounds as though you could potentially have a really bad case. Nutramigen does work for a lot of babies with CMPA, however those who are really sensitive need necocate. Nutramigen still has milk proteins in it but they are treated, necocate has none at all. DS is breastfed and we were advised to cut diary and wait 6 weeks to see results, but that was to clear both mine and his systems. In the case of formula direct I’d imagine you’d need to wait 2-3 weeks to see if it’s making a difference. If after 2-3 weeks no improvement you’d need to go down other avenues. Don’t try goats milk formula- proteins are very similar and most who are CMPA can’t tolerate any animal milk.

In the mean time I’d be pushing for referal quicker- cracked skin must be so painful for your little one. keep taking him back and if you need to ask to see someone else.

Do you have a good support network to help?

My dd (7m) has cmpa, getting her diagnosed was a nightmare and we see dietician not a paediatric dr. They went off symptoms and family history for diagnosis, they don't tend to do actual tests until weaning and only if there's a concern for further allergies, in my trust anyway.

For us 6th milk was the charm! She's on sma alfamino which is similar to neocate (my LO also has coconut oil allergy which is in some of these milks) . Unfortunately it takes time. By 4 weeks on alfamino though the change was amazing. Her eczema was gone (although hers wasn't as bad as your lo's sounds, poor love) and she actually did tummy time without screaming, her bowel movements were, I want to say amazing because that's how it felt when she went 'normally'
You can take her to a&e if it would put your mind at ease, and a friend of mine did speed thing s up this way, but she couldnt get anything prescribed by her gp and you do need to give the new formula time to work.

Its a horribly exhausting time and I'm sending you lots of hugs, and although it feels like it will never end, it will get easier. Do you have a suportive family? What's your hv like? They can help too

Similar to neocate not nutramigen! 🙄 Too many formula names!

This is just my experience with a CMPA baby - I'm not a doctor.

I phoned out of hours for advice as my son was so distressed, he couldn't have waited another day at that point. They told me to take him in and they gave him hypoallergenic formula, Gaviscon sachets, Piriton syrup and steroid creams. I noticed a difference in him within a couple of days and he was a totally different baby within a week or so.

If the creams are working, then keep using them until you see a doctor. Carry on with the Neocate as its generally considered the best formula for CMPA. My son was also in obvious GI discomfort hence the additional Gaviscon. The Piriton helped his skin but also made him a little sleepy, which helped him get some rest.

You have my sympathy. It's heart breaking and so difficult to deal with.