CMPA, Soya intolerance and Nutrimigen.

[ValiumQueen]

Hello, I wish I had posted this a year ago, but anyway.....

My 17 month old has CMPA, with Soya intolerance. Possible egg issue also. He was put on Nutrimigen after a long long battle, at age 5.5 months. After a few weeks I asked for him to be given Nutrimigen AA as I believed he was still reacting to something in the formula. I was told that was impossible, and my request was denied.

Moving forward 12 months, and I have finally ditched the formula after 5 weeks of illness. He is a new boy, eating better, no vomiting, sleeping better, generally happier. Is this coincidence? Has anyone else got experiences that might cast some light on this?

Thank you

The NHS Cumbria guidelines state that a hydrolysed formula such as Nutramigen should be tried for 2-4 weeks and if there isn't an improvement then an amino acid based formula such as AA should be used. The guidelines are here. I know you aren't in Cumbria but you would think the strategies given in the guideline would be used UK wide. I think you have been very poorly supported by your GP. Has he been seeing a paediatrician or other specialist. I think the general knowledge about food intolerances and allergies is spectacularly bad and it does seem to be a common problem.

Thank you. That is very helpful. There was an improvement, great initially, then not so great, like with the other changes along the way. The Paediatrician was not interested as he is not under weight. I hope to speak with the dietician soon. The Paed did confirm it was CMPA though, which was awesome as the GP and HV never believed me

Afaik it is classic for babies with intolerances to suddenly improve when put on a hydrolysed formula. Hurrah says everyone but then the symptom relief is shortlived. The problem is likely to be that when the allergen is in the diet all the time, as with cows milk protein, then the child develops a certain level of tolerance for the allergen. They still react and have symptoms but not as severe as they should be iyswim. Then when the allergen is reduced, by switching to a hydrolysed formula, there is an immediate reduction in the symptoms of the intolerance/allergy but then the tolerance also declines so that after a couple of weeks a smaller amount of allergen causes the same symptoms as before.

For a similar example, I am severely allergic to cats but because I have a low allergen breed of pet cat then I have built up a certain level of tolerance to cat dander. So now if I visit someone with cats I don't react as violently as I used to (think coming up in hives, eyes streaming, asthma and pruritis). If I stopped having my pet cat then my tolerance would disappear and I would go back to having severe reactions to other people's cats.

So in your DS's case there should have been continued monitoring of his symptoms and when the vomiting and sleep issues continued he should have been put onto an amino acid based formula.

That makes complete sense Stunt. Thank you Nothing I can do about it now, but understanding it is helping me come to terms with that.

DS reacted to nutramigen. Really you should have been given nutramigen AA or neocate.

I never understood that VQ. I am so grateful that my doctor said right, we need him to put on weight, we need him not to be in pain, let's go straight to AA and not fuck about*. Why wouldn't any doctor? I know it's expensive but I would say being able to feed a child is pretty much a priority. You have had such a rough ride and for no reason apart from shit advice and support as far as I can see.

*He may not have actually said the last bit

Thank you for your comments ladies. JJ I remember you saying about the AA ages ago.

Valium, may I ask, how was your LO diagnosed with CMPI? Did they do any tests?

It is a bit of a long story. EBF to 5.5 months. I asked the HV and the Doctor as early as 4 weeks if he was reacting to something in my diet. I was told to cut out cheese for a week, which I did, with no improvement. Poor sleep, green slimy poo, cough (he had bronchiolitis at 5 weeks and everything was attributed to this), there was even blood in his poo. Arching back, feeding non stop. Not vomiting after every feed, but whenever he was laying down. He is my third child, the first two were EBF.

As I was told by the professionals it was not reflux or CMPI, so then thought it was lactose overload due to frequent feeding. Again told I was wrong. His skin looked like he had been burned. I was told it was teething rash.

At 5.5 months I told HCP I was stopping BF as it was clearly hurting him. I was told to put him on regular formula, which I did. I was then given LF formula which helped initially. When his symptoms reappeared I asked for Nutrimigen. Dr gave it to keep me happy. I was also given pills for PND, even though I said it was lack of sleep and worry about my child that was making me feel so shit.

When on Nutrimigen for a couple of weeks, I asked for AA and was told enough was enough. Dr was horrid. I then cut out soya, and things got better, but still vomiting, poor sleep, but his skin was fine.

Eventually he started eating small amounts of solids, but was vomiting ++ and I was given gaviscon, then ranitadine and eventually Omeprazole at a dose that was far too low. I was told on more than one occasion I did not need to see the Paeds as he was a chubby baby.

At a year old he was still not eating properly, so I increased the meds to the max and it was like a magic switch. I saw the Paed a week after who said from his history it was obviously CMPA, but the reflux would be long gone, and to stop the Omeprazole. I told him there was no way I was doing that! Sleep continued to be shit, but I was able to stop my pills and coped. I was told skin testing was not necessary as it was obviously cows milk, and soya.

I have tried to cut down the Omeprazole, but the reflux returns within 48 hours.

There has been a marked improvement since stopping the Nutrimigen and I feel angry that I have been fucked about so much, and so little is known.

I was made to feel that I was going crazy, imagining or even wanting something to be wrong with my child.

Valium, thanks for sharing your story and I am sorry you have been messed around - why is that HCP don't take 1st mothers concerns seriously?

Thank you Art. Mummy knows best, except when there is a HCP around. All they saw was a fat happy baby.

He is a different boy now, and has been at nursery for a whole week with no days off!!!