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Intolerant to cows milk and allergic to soya, now what?

(14 Posts)

I sent DH to tesco last night for coconut milk and Oatly milk. Once DS's rash has completely gone I'll give one of them a go.

Thank you everyone for your support. Once again, what would I do without Mumsnet?! :-)

trixymalixy Wed 20-Feb-13 19:11:52

We use Kara milk (now called Koko) and Oatly. Rice milk not suitable for under 4 as a main drink due to the arsenic content. Up until 2 dC will need a hypo formula if not breast feeding.

You can buy yoghurts made from pea protein or coconut in health good shops although they are not particularly easy to get hold of. Pure spread and vitalite are dairy free and widely available. Sone brands of mayo are dairy free (think Hellmans) if eggs aren't a problem.

Seriouslysleepdeprived Wed 20-Feb-13 15:50:57

My 10 month old DS is also intolerant to cows milk & soy. He's BFed & I cut both out from my diet as he reacts.

We use kara milk from tesco which DS loves. Tried the almond milk which I like but is quite high in salt. Rice milk is not recommended for under 2's, if not older from memory. Goats milk had similar proteins & DS reacts when I eat goats cheese but might be worth a go.

GP has prescribed neocate for DS but he won't take it. I've not tried v hard tbh as I'm happy to continue to BF for now and hope he out grows it. I think 80 are over it by 3 years old and a fair few by one.

The allergist we saw ruled out any frank anaphylaxis type reaction and said its purely as gastro allergy (there are two types apparently). I would push for a referral for piece of mind.

Still not heard from GP.

Thanks for the link to that website FreeFromMum, very helpful.

KeepMum, I've never had a great deal of support from health visitors. But I'll phone them tomorrow if I get nowhere with my GP.

Scotch- thanks for advice re: goats milk, I'll add that to my list of things to try once he's feeling a bit better.

freefrommum Wed 20-Feb-13 14:00:01

Clearly your GP is clueless about allergies and intolerances - obviously skipped that class in med school! I suggest having a look at this website for some advice and support: and also joining their Facebook page. Don't be fobbed off, especially the bit about not being able to prescribe special formulas as that's a load of rubbish (probably the practice manager trying to keep costs down - would they tell a diabetic they can't prescribe insulin due to cost?). I would suggest that you would have a very good case for complaining to your local health board or primary care trust.

Gp sounding pretty rubbish, tbh. Very rare for kids to be lactose intolerant.

Think you do need referral to get specialist formula now; community dieticians within yr community paediatrics team shld be able to help. Do you have a sensible health visitor? If so, they may be more use, and in my area can refer to community dieticians....

SCOTCHandWRY Wed 20-Feb-13 13:44:16

Like Shelley72's dc, my DS is fine with goat milk, but not soya or cow milk.

If the reaction is fairly mild, it might be worth trying the goat as you can get goat butter, cheese and yogurt in most big supermarkets.

Thank you so much everyone. I'm still awaiting for the GP to phone back. So far we haven't been referred anywhere. I asked the GP about special formulas (specifically aptamil pepti 2) but he said he wasn't able to prescribe any formulas due to the money, so who is able to prescribe them? My GP hadn't heard of Cows Milk Protein intolerance so he said it must be very rare (doesn't sound like its that rare).
He said to wait for result of stool sample which will say if he's lactose intolerant or not. Sounds like my GP doesn't know the difference between lactose and cows milk protein.

Come on GP phone back!

GP should know this - it's fairly common.

The only way to diagnose slow-acting allergy to cow's milk protein or soya like this (now described thus, whereas when DD started 4 years ago it was described to us as intolerance!) is by exclusion and reintroduction, so don't be fobbed off if the stool sample comes back negative.

Pepti Jr may be the first-line prescription, but be aware that it's not fully hydrolysed, so some proteins remain and some kids still react (my DD was fine, but not DS). Otherwise, probably Neocate, which is a bit vile-tasting.

If you're still breastfeeding and your DS isn't reacting to the proteins through breastmilk, that's great. You could keep doing that, and then use either a prescription formula to cook with, or something like Oatley (milk made of oats!), or we're using a milk derived from coconut, called Koko (just changed name from Kara). You can get Oatley that's fortified with vits and calcium, and same with the Koko.

Dietician should be able to give you a list of other foods that are rich in calcium - tinned fish with bones still in, sesame (so tahini in hummus is v good), leafy greens like spinach, broccoli etc.... This is all availble online too.

My advice, if you're getting the feeling the GP doesn't really know their stuff, is to ask for a referral to your local allergy team. I have long and painful experience of various healthcare professionals not really knowing their stuff in this area, so arm yourself with as much info as poss!

Hope that's of some help. I know it's daunting, but you get used to managing it. Feel free to PM me if I can help more.

Good luck smile

shelley72 Wed 20-Feb-13 12:56:48

DD was the same - EBF and CMP intolerant and allergic (rash and sick) to soya milk/yoghurts.

we were advised by the hospital not to use rice milk under 2 - but we could try coconut milk, and latterly almond milk neither of which she liked. she can however tolerate goats milk quite well which is odd as the structure of the protein is similar in structure to CMP apparently but it is the only milk she will drink. we are still under the dietician but she does seem to be slowly growing out of it. have you been referred to the hospital by your GP? and try and make sure that you yourself are taking calcium supplements if you are still BF and dairy free.

BreadForMyBREADGUN Wed 20-Feb-13 12:46:11

My nephew is CMP intolerant and soya intolerant - he's on hydrolysed formula that was prescribed for him.

Stropzilla Wed 20-Feb-13 12:36:17

Sorry didn't read 10 month part. Dd is lactose intolerant we have been prescribed pepti Jr.

Stropzilla Wed 20-Feb-13 12:34:54

Im the same I just use rice milk.

I'm new to all this. My 10 month old DS is breastfed but has been having diarrhoea and vomiting since I started adding cows milk products to his diet. I saw the GP who said to get some soya formula and use that for cooking. I bought some soya yoghurts too and he them yesterday and he's now got a rash from head to toe.

Returned to GP today and asked what to do next. Just GP says he's stuck and doesn't know. He's going to phone a dietician for advice and phone me this afternoon.

I've done a bit of googling and I'm assuming he is cows milk protein intolerant.

A stool sample was sent off 2 days ago.

So what do I do now?

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