Is this normal??

[Lou C]

Hi everyone, well Zac has been off the wheat now for about 2 weeks and nappies are much less frequent. Just before we went away I brought a bottle down which had been left upstairs for a couple of days (yuk!) when I took the lid off the smell of the stale soya milk was strikingly similar to the nasty smell that is Zachary's nappies. I didn't read too much into this, but kept it in mind to ask you all. Anyway I took oat milk away with us so he hasn't had any soya milk for the past 4 days, but he has had soya yoghurt and desserts, his nappies have been one a day and a "normal" smell. He had soya milk last night and on his cereal this morning and mid morning another yukkie nappy!!! Please, please, please tell me this is "normal"!?!
Can any of you who have a soya intolerance shed any light?
I'm beginning to sound obsessive I know, just looking for a bit of reassurance.

[Pam]

It sounds like the soya milk could be the culprit. As he is one, he doesn't actually "need" formula milk any more, but as he has other food problems formula is very good for ensuring that he gets the correct nutrients and enough calories into his body. A hypo allergenic formula would be the best replacement but you might need a dietician to push your doctor to prescribe this. You really should take advice before removing formula completely as shop bought alternative milks often offer very little nutritional value.

If you can cut soya down to a minimum you might get away with a yoghurt here and there or a bit of soya in other foods occasionally rather than total exclusion.

[Lou C]

Hi Pam, thanks for that, perhaps I should try him back on the nutramigen.
The dietician told me not to bother with formula when I saw her as he has a good diet, he was 9 months at the time, and still having some breast feeds she took it that I would stop breast feeds at one year, (and I did, well Zac did!!!) and just to buy supremarket soya!! He has actually got hypoallergenic formula on repeat prescription but I haven't used any for a while, I have been giving various milks, soya, oat and rice so that he was used to the different tastes just in case this happened. He is on oat at the moment and seems okay. I don't rate the dietician at all to be honest, I've got much more advice and info from you guys on here. He seemed to be okay just having the yoghurt, so perhaps he can tolerate small amounts of soya.

[Pam]

I stopped seeing our dietician as I didn't like her or her advice. If Zac has a really good diet he will probably be okay without formula but you need to be aware that standard soya/rice/oat milk is usually low calorie, low fat and doesn't have much in the way of nutrients, very similar to skimmed cow's milk which isn't recommended for children under the age of 5. The only advice given by our dietician that I followed was to keep giving my daughter formula until she was 5, but she is a very faddy eater and that was the only way of making up her diet to something near adequate.

[tigerlily]

Just wondering, if he has problems with Wheat, isn't OAT MILK a very risky thing to give as many people who have problems with wheat (I'm thinking of the gluten in it) also have problems with Oats (gluten-rich)!?

Yes, could well be a soya intolerance. Eden had it before, thank God it was only transient. It makes your life much more complicated... We switched to RICE everything. I would give it a go. Do it for 4-6 weeks. Buy Rice Desserts instead of soya yogurts (www.goodnessdirect.com (http://www.goodnessdirect.com) or www.dietaryneedsdirect.co.uk (http://www.dietaryneedsdirect.co.uk); come in Chocolate, Vanilla or Hazelnut) and switch to a Hypoallergenic Formula. Seeing as he is only 1, Rice Milk is not suitable for his dietary needs. Be careful with his other foods as most things contain soya of some sort.
If you have a decent GP, I wouldn't bother with the Dietitian. Ask him to prescribe the formula for you.

Eden stayed off soya for ca. 5 or 6 weeks and let me tell you, that was the hardest diet she has (yet) been on. But it worked and she can now have small amounts of soya again.

Good Luck!

Vanessa.

[matt]

less gluten in oats but still there... so oat milk not too advisable....

[Lou C]

I know oats contain gluten, the advice I've read has been very contradictary, but it seems that it is often tolerated even by coeliacs. I've not worrid too much too much as the gluten test came back negative, and he has made some improvement being off the wheat. The other thing is that if he still has a problem on oats then I'm justified in pushing for more investigations, referral to the gastroenterologist. When I've finished this carton I'll put him back on the nutramigen (if he'll drink the stuff!!) for a couple of weeks then try each thing in turn and go back to making a food diary.
He's got fungal nappy rash at the moment bless him, I'm surprised hehasn't had anything before with all the nappies he fills!!!

[tigerlily]

Have you tried CANESTEN HC (~ £ 4.50 over the counter) for the nappy rash/thrush? Eden gets it all the time, sometimes REALLY bad. We've even ended up in Casualty once because of it - she couldn't sit down anymore as it was that bad. Sometimes thrush can also be caused by some fruits (the sugar in it).

Eden started off with no Gluten and now, after 7 months, she's also got problems with Wheat and is off that, too. Oats are impossible to digest for her. Apparently some Coeliacs can tolerate Oats, yes. I don't know many, though. I think it all depends what other allergies/intolerances they have.


Vanessa.

[Lou C]

Yes, I got some canesten HC from the doctors yesterday, so hopefully should clear up soon.