CMPI or lactose intolerance?

[Hotpotpie]

I'm hoping someone can help, I have a five week old daughter, due to issues with tongue tie/misaligned jaw I stopped breast feeding at 2 weeks, she was often sick after bm but no other big problems.

After introducing aptamil she developed spots round her mouth and chin, each day spreading a bit more, she showed signs of reflux - sneezing, gulping, vomiting, arching her back, and became very windy and unsettled, she sounds weezy much of the time and grunts at night

My older daughter is lactose intolerant so I took her to the gp to discuss wether this was the problem, he felt that it was so rare it was more likely to be CMPI. So far we have tried colief and gaviscon in normal milk with no improvement, now I have nutramigen. I was advised to wean off the colief but when I reduced by half her reflux symptoms came back with vengeance (I know, I've Googled it makes no sense but that's what happened)

So now, rash is gone, weight gain is good, skin is pretty dry but better than it was but she's still windy, constipated, grunting and wheezing away and her reflux is a bit better but still pretty bad - it's more of a silent reflux now

Does this sound familiar to anyone? Im still not convinced it's CMPI but would going to just lactose free milk help as I believe nutramigen is lactose free?

[dementedpixie]

Sounds more like cmpi than lactose intolerance to me.

[Hotpotpie]

Thanks, I think I'm just hoping is lactose because a. I know exactly what to do and b. She's not improved much it's awful to watch
I'm finding colief so restrictive and as technically it's now redundant I'm frustrated that I can't stop it. Nevermind we will keep going as we are

[Allyoucaneat]

Sounds like the symptoms my wee boy had with CMPI, especially the grunting and spots round the mouth (my sons face was covered when we switched to formula).

If you are still breastfeeding you will need to completely eliminate diary from your diet (including hidden milk in biscuits, breads, crisps etc). It will take around 2 weeks for the milk proteins to completely leave your system.
Formula - nutramigen still contains some (broken down) milk proteins, if you think she may still be reacting to that ask to put her on neocate which is entirely hypoallergenic.

[trinitybleu]

Nutrimigen is CMP free too, from memory. Certainly a friend with a CMP allergy baby had it (my DD was lastose intolerant and we used to borrow tubs from one another if Boots ran short)

[HariboFrenzy]

There are 2 types of Nutramigen -Lipl is hydrolised (so still contains milk protein but broken down) and Puramino is cmp free

[Hotpotpie]

Thanks everyone she's on the lipl, started just over a fortnight ago, I think I'll give it a few more days and if her reflux/colic is as bad head back to see the gp perhaps we need the other type with no cmp

[3boys3dogshelp]

My ds couldn't tolerate nutramigen at all but was fine with neocate. If you're already 2 weeks in I would go back Asap - once we cut out cmp we saw an improvement very quickly (he carried on improving for a couple of weeks but I could tell within 48 hours that he was much happier). It is much more expensive so the Dr will try nutramigen first.

[Hotpotpie]

That's helpful to know thanks, how is your son now? Has he outgrown the allergy?

[Kim82]

Hi, my daughter reacted to the small traces in nutramigen Lipl so she was put onto nutramigen puramino which is essentially the same as neocate but a different brand so maybe ask if you can have the puramino.

She may also have silent reflux on top of the cmpi - my dd does and still suffers with it at 16 months despite having always had a completely dairy free diet. She may need treatment for the reflux too.

[Kim82]

Just to clarify when I say my dd still suffers with reflux - she is symptom free as long as she has had her meds, we haven't managed to reduce them without her symptoms coming back yet though.

[Hotpotpie]

Your poor daughter - did the reflux improve when you weaned her? My daughter has a tongue tie, it's getting cut on Wednesday I've been told that it may help with her symptoms, I'm clutching at straws but hopefully it will help as well

[Kim82]

Her reflux seemed to get worse when weaning for some reason - she still can't eat acidic food such as apples or pineapple without suffering - and we had to up her dose of meds at 8 months. She's not had any problems since then though as long as she has her meds. We keep trying to reduce them every couple of months but haven't managed it get.

Hopefully sorting the tongue tie will help with her symptoms but if not then I'd definitely ask for the puramino and/or meds for the reflux.

[3boys3dogshelp]

Sorry I was just doing the school run. He is still dairy (and soya) intolerant although he just gets a bit of wind/diarrhoea now without being unwell in himself now. Apparently a lot of children grow out of it by 2, but there is a group who don't improve until 6-8years old.
I was upset when he was first diagnosed but I don't think about it much now, in fact he is overdue for challenging and I have forgotten to do it! Once you get the hang of checking labels, which you must be doing already, it is pretty easy to stick to. Ds was be and extremely sensitive- he would react to even small quantities of 'hidden milk' in my diet.

[Hotpotpie]

I really appreciate your replies, I'm feeling a bit lost as you can probably tell and if I'm honest a bit overwhelmed. I'm going to head back to see the doctor again, I've been putting it off hoping things would improve but they haven't, it's helpful to hear from people with first hand experience the doctor is lovely but he is just going through the motions