Cow's milk allergy confirmed, now problems with soya milk

[AlexanderJohnsMummy]

Hi there, hoping for some insight from other parents who have been through this.
My DS (18 months old) has always been very colicky and a bad sleeper. He's recently been diagnosed with CMA, which was causing eczema.
We put him onto soya milk. The eczema cleared up ENTIRELY within 2 weeks.
He's now got beautiful skin but persistent diarrhoea!! Hes been up at 5.30-6 every morning this week covered as its explosive (TMI, I know) He's had a stool sample done which came back negative so the GP prescribed Nutrimigen hypoallergenic formula. I cannot get him to even entertain the idea of drinking it. I've tried mixing it with his soya milk but he won't touch it, even with only 1oz of Nutrimigen mixed with 7oz soya milk. I've tried putting nesquik strawberry powder in it and he still won't touch it.
I've looked into using goats milk but was told it is iron deficient, and all the other milk substitutes available (hemp, rice, oat, almond, hazelnut) say they're not suitable as a sole milk source for children under 2 or even older.
I tried to speak to a HV yesterday but she said I have to go to the GP or be referred to a dietician. I'm trying to sort this myself instead of seeing the GP every 5 minutes!
Can anybody suggest a suitable milk substitute please?

Sadly I think it's a GP one... There are other brands of hypoallergenic formula where the milk protein has been hydrolyzed which are more pallatable but they'll need to be prescribed unfortunately. Others will have tips about which ones tasted better. Our allergist said that at seven months DD already had enough of a taste of what nice things taste like to accept Nutramigen :-/ My DS had it so I know what he meant! I'm guessing by 18 months he's having lots of solids so won't be hungry enough for milk that he can be persuaded to drink it and
he'll just pass altogether? It should be really straightforward for the GP to prescribe a different brand.

In terms of other alternatives it's worth knowing the milk protein in all animal milk is very similar so not suitable for people with CMPA. My DS's consultant responded to my question many years ago with a very weary 'no goats milk, no sheeps milk, no donkey milk (!) no milk of any non-human mammal' I suspect i wasn't the first to ask

Really brilliant that his eczema's cleared up!

Thanks for the reply. I told the GP months ago that I thought he was allergic to milk but the GP just kept throwing flipping steroid creams at me!! :/
I'm going to book an appointment today. I'm sure my GP thinks I've got Muchausens by proxy, we're there that much!!! :0

Isn't it more the calcium they need from milk? Because if they eat meat surely they can get plenty of iron in food at this age?

I wouldn't expect iron to be coming from milk in an 18m old tbh, more from meat and green veg in varied diet. I'm lucky that DD is still BFing, but we suppliment this with enriched Oatly for cereal and as a drink. Dietician said this was fine.

She has a variety of substitutes, including pea protein yogurts. I get away with using goats milk and DD can tolerate this much better than cows milk. Its really about finding what works for you :)

It's vile stuff, my DS wouldn't touch it either. I was still bfing and continued until he was 2.

I have heard that pepti junior is more palatable, but don't have experience of it myself.

kara coconut milk. Dd2s dietician said that she could have it and she was little over a year at the time. www.karadairyfree.com/news/new_product_-kara_dairy_free_original_calcium_chilled/

It's vile! My LO refused it too, but took aptamil pepti, you could ask to try that? X

have you tried cooking with the formula?

have you looked in to higher calcium rich foods?

get reffered to a dietian who will give you other ideas to try.

keep food high cal if not drinking milk, olive oil etc.

some vegan sites may provide some kid friendly meal ideas to add higher amount of calcium rich foods in meals while milk is not being drunk!

My DS has aptimil pepti and it doesn't taste too bad (yes I've tried it!!) I have heard the milk your DS has is particularly yucky!! Good luck and don't worry about the gp I'm sure he'd rather see you and your lovely little boy than examine something nasty in a nasty place

Hi guys, went back to the GP AGAIN....he prescribed aptamil pepti, DS won't touch it! I tried it this morning and it's FOUL! It's got a really sour aftertaste that stats in your mouth for ages afterwards. He wouldn't take it half and half with soya or 2/6oz with soya either.
I bought some hemp milk today so I'll try that....looked at the coconut milk but wasn't sure...thank you for your advice.
Appt with allergy consultant next week do will push for a dietician referral...:/

I must have weird tastes then cos I thought it was ok!!

Also maybe try mixing half an oz of aptimil to start with and build up really really slowly!

I give my DD2 Kara coconut milk. It's actually really nice, we've tried the hemp milk too but Coconut milk is the current fave (they also do a chocolate version which is fought over in my house).

You must Ellie! It's close tasting to normal formula tho I think tho, I done it gradually an oz a day and he took it fine. Must have been scared id try to put neutramigen in again yuk!

I used to use it to cook but don't now as he has plenty of formula.

Fwiw, ds would only drink aptamil pepti with half teaspoon of nesquik mixed in. I should add he was only drinking two bottles a day. He did drink it but was allergic to it as well unfortunately (hydrolysed whey).

We are now using vanilla flavoured rice milk. I worry about his teeth but there is no sugar in the ingredients. Does anyone know whether it's ok? He won't touch other milks and I was desparate to stop bf last month (he's 17 mo).
[anita] where do you get pea protein yogurts?

I think children are not supposed to have rice milk due to the high arsenic content!!

Pea protein yogurts can be had at Holland & Barrett.

Thanks invader. I mentioned the arsenic thing to ds's dietician at the hospital and she brushed over it and was reassuring saying we'd tried so many options that fair play (I didn't tell her vanilla though as hadn't tried it yet ). I guess it would be more serious if he were having it more than twice a day.