Stuck on stage 1

[Morechocmorechoc]

I'm hoping someone has a similar experience as I've looked at milk ladder threads and nobody seems to be in this position. Kids seem to fail or go quite far up the ladder. We have managed stage 1 but are now stuck as get tingling tongue on muffins. Fortunately he is 5 so can tell me before anything worse happens but I was so hopeful after biscuits were OK that we would keep going.

Anyone else stuck at stage 1 and how long did it take to move to the next stage? Thanks very much in advance.

I have CMPA and would seriously advise him going back to being completely DF for a while to give his gut time to heal.

Thanks for your reply. Stage 1 is having no impact and the consultant said we must not go back or it could make the allergy worse. So much conflicting advise everywhere, it's so hard to know what to do

Ok so I'd stick with stage one for a good while then before trying stage 2 again, especially if he keeps failing it

Thanks

Tongue tingling sounds like an IGE reaction?
Isn't milk ladder for non IGE allergies?

He has ige reactions in the past but they still wanted to try it as they say its harder to grow out of it if you leave it too late.

Gosh, that would scare me to try at home!

We're doing baked milk immunotherapy with my 3 year old and he started at 1/32nd of a muffin and is now on half a muffin. This is done in London and every dose increase is in the hospital.

The issue is that it's private and costly. Apparently it's available on the NHS in some places but I can imagine waiting lists are long.

Who is managing this reintroduction for you? Advising you what to do?

In my experience both paediatric allergy consultants and paediatric allergy dietitians are exceptionally risk averse. More so than I am as a parent. I very much doubt they would allow an at home introduction if they were concerned about the risk. If it is a gp I would seriously consider getting a referral to an allergy team and letting them manage it.

How long do they advise you go back to stage 1 for after each failure? Every child is different so you really need to follow their advice.

Stage 1 was done in hospital with biscuits over the course of a morning. We were then told to do this increasing over two weeks then stage 2. Because there were no issues at stage 1 (which was very unexpected) I guess I got very hopefuly we could fly up the ladder!! They say never get your hopes up.

Allo, that sounds really good. I knew they did that for peanuts, didn't realise they did dairy too. Have you had any issues? What is the time frame for each stage if you don't mind me asking?

This might not be relevant at all and not sure I should even say it as it might send you down a garden path but....

I was at a food challenge clinic a couple of weeks ago with my toddler and the boy next to us was a bit older 11/12 so able to communicate well. He was having a nut (almond I think) and the only symptom he experienced was a tingling mouth. They were not concerned and said it often happens if you have hayfever. No idea if it would also apply to milk but might be worth asking about.

Best of luck, I think being unsure about a particular ladder step is even more frustrating than a clear fail!

Happy to share details, we didn't know about it either until last year.

We increase the dose every 3 to 4 weeks at the clinic and then give that amount each day alongside some other food (it can be any food so we usually do a soya yoghurt or fruit puree), with a 1 hour rest period after.

He had one contact hive on the very first dose and a mild eczema flare the first week, but amazingly no reactions since. I'm quite shocked to be honest as his ige levels are so high and he's never tolerated any milk.

Thanks for sharing that. That's so good you could continue despite the hive situation and that the eczema passed.

We had contact issues for a long time, I didn't even know they'd gone!

Thats helpful to know how slow you are going. Think we will stick with what we are on for a while then before trying the next stage.