food intolerance (cow's milk and soya) - what help can we get?

[SamN]

Hello there, hope you can point us in the right direction with this:

My 2 yr old son has an intolerance to cow's milk (which I discovered while breastfeeding) and since 10 mths old has also reacted to soya. The only 'specialist' we have ever seen is a dietitian, who has been of very limited help.

I recently went to see our GP about ds's situation, and she expressed surprise that he had never been seen by a consultant and promised to arrange a referral. However, we have only been sent another appointment with the dietitian.

If any of you have children with food intolerances, what specialists have you seen, have they been helpful and were they on the NHS or private?

Thanks v much

Sam

(P.S. We are assuming these reactions are due to intolerances and not an allergy because the dietitian did arrange for a RAST and none of the substances tested gave a higher IgE level, although neglecting to put cow's milk on the list wasn't very helpful - he also had high IgE levels in his blood anyway so she commented that he might be reacting to something else, but she hasn't done anything about this possibility.)

SamN - my ds was referred to see a paediatric immunologist when he was a baby because of my family history of severe allergies and my own milk allergy as a baby. Ds was not showing any signs of allergy, but my GP and I thought it would be worth a check and to get advice about weaning. My GP referred us but it was paid for through BUPA. The PI was very helpful, but he didn't do any allergy tests as he said they were unreliable in babies of that age. He said to keep all my children off milk/wheat/eggs and other allergy-type foods for at least a year and to use soya if it agreed with ds (which it did). Anyway, as it happens I think ds does have a mild intolerance to cows milk, which is very different to an allergy, as he does much better on goats milk. I have also used goats milk formula for dd (10 months) and she's happy on that too. Have you thought about trying that? It's expensive, butif it agrees with your ds better, then it is worth it.

Sorry, when I say my ds does better on goat's milk what I mean is that he always had quite loose stools at random times of day, plus a lot of wind, and since he has been on goat's milk he has been more regular and far less windy. Is it a stomach thing for your ds, or does he get skin problems?

We had this (in ds's case the intolerance was actually worse with soya than it was with cows milk) - and the answer was the same as Wilbur's, to use goats milk which seems to agree with ds much better. In fact his intolerance is either not so bad that small amounts of cows milk are ok, or he's growing out of it, as he now seems to cope ok with cows milk cheeses and yoghurts. I have actually seen something - it was SofiaAmes who posted it I think - which suggests that there is something in the process of converting milk into cheese and yoghurt which makes it easier to digest.

Wow, thanks for such speedy responses wilbur and GillW.

Marcus seems to get skin probs along with the digestion probs. When he was little he was very 'colicky', which we eventually linked to my consumption of cow's milk, and also had some eczema patches which seem to have disappeared since avoiding cow's milk and cow's milk products. He still gets a rash on his face (and then diarrhoea later) if he inadvertantly consumes anything with cow's milk protein or soya protein in it.

Unfortunately this seems to include yoghurt and cheese at the moment.

I know it's not as bad as an allergy would be, but the dietitian seems to be pushing us to try to re-introduce cow's milk quite frequently, and from what I've read, it seems that his body would recover better if we completely avoided it for quite a while.

She also seems to know less about food intolerances than me and I've only read one book! which is why I wonder if seeing someone else would be more helpful?

I'm certainly interested in the goat's milk option because I had a cow's milk intolerance when I was little and that's what my parents used with me! I think I tried it when I was breastfeeding Marcus and wasn't sure if it was any better, but he's older now so it might be worth trying again. Thanks for reminding me.

Sam

What about non animal substitutes?

Like rice milk or almond milk?

has anyone tried those with kids?

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Hi Sam N

My daughter (now nearly 5) had terrible eczema, which we eventually sorted out with a non-dairy diet despite the medical profession poo-poohing it. She is now 100% clear. Last year, I had another baby and not wanting to suffer the same thing, we have used Nutramigen formula milk (which has the milk protein which causes the introlerance broken down already) and I am now just starting to wean him onto a milk called White Sun manufactured by Plamil & available at all Holland & Barrett stores. It is weird stuff made from pea protein & apple juice, but suited Katie (she was also intolerant to Soya) and now seems to be suiting Euan - it has the added advantage of having various vitamins added to it too. Plamil have a website if you want to look.

Take care
x

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Hi everyone, thanks for your useful suggestions. I plan to go to the appt with this dietitian just so I can show 'willing' to work through the system, but I will certainly mention that his high IgE levels suggest he should be seen by someone else. If she won't do anything more I shall go back to the GP. I did call the GP last week when I realised the referral was only to the dietitian again, but she hasn't got back in touch with me (yet).

We're planning to move soon so this might be an opportunity to find someone more helpful.

Sam

I have to say that scaremongering comments about rice milk infuriate me!!!

My Ds now 4 went down the normal route of breast/formula- vomitting cows milk vomitting work some eczma (SP?) soyamilk for about a year with more aggravated eczma type rashes and eventually has been HAPPY AND HEALTHY!!! on rice milk, you can get it with fortified vitamins and organic and his skin has been 99% Better as has his general health.

So do your own research and make your own decisions.

Wishing you luck from a contented mother of a HEALTHY rice milk drinker!!!

Stace - someone (sunchowder?) got a lot of grief on another thread for recommending rice milk and left mumsnet for a time - I think robinw is just making sure she doesn't suffer the same fate.

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But the baby in that case was only 5 months old and had been fed only on rice milk. SamN's ds, which is where this discussion started, is 2 years old, and presumably getting the majority of his nutition from solids. Milk (or substitutes) would constitute only a small proportion of his diet, so the cases are not really comparable.

Yes, Marcus is 2 yrs old and eats very well so I'm not worried about his calorie intake or even calcium intake - I'm fairly used to keeping an eye on the calcium intake by now. We have started putting rice milk on his cereal instead of water or diluted fruit juice, and he eats loads of fruit and veg anyway so I don't think his vitamin levels will be affected by having slightly less fruit juice each day. Plus, rice milk is really useful for cooking lovely milky puddings which I haven't made for ages, and even a pretty good custard (though I say so myself)!

I was more worried about what might be happening to his immune and digestive systems if he were still eating something which he shouldn't be, or if we try to introduce cow's milk protein or soya protein too early.

Sam

p.s.
The rice milk does say pretty clearly that it's not to be used by children under the age of 2 - unfortunately this is probably a result of the sad case in Australia that robinw referred to.

Sam - straight from the horses mouth. My dd (3) was tested for allergies last night. Unfortunately, intolerance is not something where there is a test available. The Doctor told me that I have been doing everything right and that to carry on with the Rice Milk/Soya etc. He said she obviously just doesn't like cow's milk. I went to the consultant privately recommended on my previous thread asking for the name of a consultant. I really think you are doing everything right. However, it is nice to get reassurance that Mum knows best! Try not to worry too much.

My ds has just been disharged from his 3rd stay in hospital due to feeding problems (he is 19 weeks old). He is cow protein / bmilk intolerant, however during this stay the consultant asked if we would consider trying him again on cow formula. The dietician we have is fantastic, paediatric specialised and really knows her stuff. So far after 5 days there is no vomiting. we have direct access to the ward in case of any problems. I have to say, the hospital have been very supportive and 10 out of 10 for our dietician. For your information we are in the Chichester area W Sussex. Good luck with your little one.