to be annoyed at local dietician clinic?

[cjt110]

My son was diagnosed with a cows milk protein allergy in August and we were referred on 20 August for a dietician appt. I called my GP who said they havent heard anything and so I could call the clinic myself.

I did. To be told that a dietician has left and so even though they have his referral and are holding a clinic in October and November, he cannot have an appointment. And that they didn't notify/reply to my GP with this info.

Yanbu OP.
Is there anything specific you wanted to find out from the dietician? DS3 has CMPI and I didn't find the appt we had very helpful.

She gave us a couple of photocopied sheets about calcium and a milk ladder.

ArtichokeHeartsAppleCarts Mainly if he is getting the right amount of calcium and when do we try the milk ladder?

He was diagnosed at 11.5m. He always had cheese, yoghurts and cows milk in his cereal and "eczema" after starting weaning but didnt worsen/get better. We introduced cows milk to drink at 11m ready to transition at 12m and within 2 days he had an horrific rash, struggling for breath, sky high temp and pulse, low sats (we ended up in local a&e and under observation). They said it was just an infection but as soon as we stopped giving him milk, his symptoms started to clear. We did our own mini exclusion diet whilst waiting for our GP appt. Did exclusion under GP advice and then diagnosed at just shy of 1 yr.

GP didnt really give us any advice because of the dietician referral. I think I'm doing it all right but who knows.

I've tried to post pictures of the sheets but it's not working!
if you go to www.bda.uk.com/food facts and find the section "nutrients in foods" you can download the calcium one which is the one I was given. There's another section with suitable alternative milks too but I expect you know to avoid rice milk as a main drink until 4.5 yrs already.

www.bda.uk.com/foodfacts even

We were told to try milk reintroduction after 6 months with DS but he's intolerant rather than allergic so may well be different, and to have piriton to hand.

tbh I am in no rush to reintroduce dairy

ossau iraty is a delicious ewe's milk cheese if you haven't discovered it already
HTH

www.waitrose.com/shop/DisplayProductFlyout?productId=47551

Thank you very much for the link. Does he have to have alternate milks Artichoke or it that just if we choose to?

We've been advised to avoid ALL animal milk/products by our GP. Just shocked at the apparent lack of a flying whatsit to not even tell our GP!

What you describe doesn't sound like classic cows milk protein allergy at all. Has he had any testing?

It does sound like cmpa to me, I have two children with that plus other allergies. There's a great charity/support group on Facebook called CMPA Support that could be worth you joining.

Also, the advice about substituting with other animal milks is terrible as most children who are allergic to cows milk will be allergic to goats and ewes milk too ... Depending on which milk proteins they are most allergic too, these may actually be worse.

I'd push for some tests, and in the meantime if you are avoiding all milk products then it would be wise to use alternatives to ensure adequate calcium intake. We were advised to use a hypoallergenic formula (soya in DD's case) from weaning until at least 2 but advice about this may have changed.

What's certainly not classic is tolerating milk in cereal, yoghurt, cheese etc for several months, albeit with some eczema, but only having a severe reaction when drinking milk.

You don't have to give an alternative milk but it's a good way to get calcium into them; soya, oat or hemp milk are great although some children with cmpa are also allergic to soya.

Allergies can increase in severity with exposure and amount eaten/drunk. A small amount of the raw milk protein on cereal may have been okay but a full bottle may have been too much. Allergies can be complex, I'd be asking the GO if you could be referred to an allergy clinic at another hospital if your local one is struggling.

Mistigri Sorry I missed that he also had terrible nappies, snotty nose, sickness too. We have been advised to miss off ALL animal milks - I meant alternative milks such as coconut milk, oat milk etc. He is on aptimil pepti 2 as prescribed by the GP and I wondered if he also needs to try other milks for when weaning does come around. Testing? We can't even get a bloody appointment! lol

PragmaticWench I am on that facebook group you advised about - thank you. I am definitely going to push this with my GP. I am not a stupid mum by any means but I want proper medical advice for my son, not just things gleaned from other parents/internet etc (although I know they often speak more sense than the medics!)

So sorry cjt didn't realise ewe's milk was a bad idea.

DS won't drink milk of any kind since giving up bf at 15 months. I use almond milk with added calcium in cakes etc though. I know DS is calcium deficient but he is growing normally and has ASD so it doesn't matter what I would like him to eat, he has oral/smell sensitivities and so is not able to tolerate the taste/smell/texture of lots of food. We just do the best we can

DD used to have the blue carton of oat milk - can't remember the name - but it was the one recommended to us as it's got added calcium and vitamins.

Aptamil pepti 2 is a hydrolysed formula where the milk protein has been broken down. In my DS's case he was still intolerant to this and needed neocate which has no milk protein in it.

Been fobbed off again by our GP. Told to book a routine appt. First one is 5th Oct.

Spoke to the other hospital in our PCT who DO have appts for Nov. Relayed this to receptionist who said well you can discuss that at your appt. FFS. I am so pissed off.