Leap study & severe egg/milk allergy - Any advice please

[zeered]

We have put my little baby boy, 5 months forward for the leap study. He has suffered from severe eczema since around 8 weeks old. Today, we had our initial screening and found out from the skin prick tests that he has a severe allergy to eggs, is also allergic to milk and wheat.

Our follow up appointment is in a few weeks...Would appreciate any advice from anyone who has taken part or is aware of the leap study? Obviously want the best support possible as there is a chance he could develop peanut allergy but so frightened we would be doing the wrong thing if he is in the peanut consumption group. Very difficult decision. Would be great to know how supportive they are in managing all allergies over the course of the study.
Many thanks

Hi zeered. We put DD forward for the Leap Study at 7 months but she tested positive for peanuts so couldn't join the study. It's a difficult decision, but your DS might develop peanut allergy whether he's in the peanut group or the non-peanut group - at the moment no one really knows which approach is best.

The way I looked at it was that I would get amazing support for DD's other allergies, with regular phonecalls etc and always someone you can contact with queries. If you don't join you will probably get, at best, 6-monthly appointments.

Obviously I can't comment on how good the support is because we only had the initial screening appointment, but I know I would like more support and advice than I get now.

One other thing: are you still breastfeeding? DD's eczema cleared up completely once I cut dairy and egg out of my diet - it was amazing. Worth a try...

Good luck whatever you decide with the Leap Study!

You need to speak to Strawberrycornetto - her LO is on the LEAP and the last thing I heard she had really good results. Hang on, let me get one of her threads...

www.mumsnet.com/Talk?topicid=allergies&threadid=633073-Leap-Study-appointment#1 2890418

I wonder how you can get her attention, she is really great and knows loads about this area.

STRAWBERRY _ ARE YOU ONLINE?

Just as an aside, we are on the STOP Study and I would support any parent who puts their child forward. It is hard but we are doing the very very best for our children. If they can forward medical science and our children will benefit in the long run then I say go for it, you can always pull out if you are not happy at any time. You are in charge with these things.

Hi Zeered. AS BBF said, our DS is on the Leap Study. He's just coming up to 1, and was diagnosed as allergic to milk at 7 months. He was eligible for the Leap Study as he also had eczema, and when he did the skin prick tests there he also showed up as allergic to egg.

I had the same concerns as you. Its a really tough decision. We decided to go for it because, in the end, we thought that the access to the advice and support for his allergies made it worthwhile. DH thought it would be better if he was in the consumption group because that's where the advice seems to be going. I hoped for non-consumption because I'm a mum!! It turns out he's in the non-consumption group.

Overall, I have been really impressed with the support. They generally call me once a week and give me a chance to answer any questions. I called them when I thought DS had an allergic reaction to penecillin and they gave me really good advice over the phone and they followed up. DS has been ill quite a lot since we joined the study and they've been helpful with that. They also did allergy tests on my older daughter to make sure she didn't have a peanut allergy because she'd never eaten peanuts, so that was good too.

I completely understand your dilemma, I felt exactly the same and I haven't had to deal with him being in the consumption group. But from what I've read about allergies, there seems to be a strong chance that they are right, so being in that group makes a peanut allergy less likely.

I hope that helps, if you have any other questions let me know.

BBF, thanks for saying nice things about me

Oh, meant to say, I was still feeding DS at the time. I cut out dairy and his eczema has pretty much disappeared. It was never really bad, but it was sore and persistent and nothing helped it for months. So cutting the allergic foods out might help and I did find the dietician on the leap study really helpful with dealing with this stuff. You can email them at any time and they have always responded to me straight away.

Most welcome Strawb, glad to hear it is going well. xx

Thank you all very much for the advice. So supportive. Think we going to go for it then as really would like the experts on hand for the range of his allergies. Although am very nervous. Am still BF and have eliminated all egg and dairy from my diet for the past 4 months. He still suffers but who knows how much worse it would be if I didn't!

What is the STOP study?
Many thanks xx

Just to update, we have joined the leap study so if anyone needs any advice on this in the future, you can contact me [email protected]