LEAP Study (peanut allergy study)

[slowlearner]

Does anyone have a child taking part in the LEAP Study? We're thinking of enrolling dd and would be interested in feedback from anyone who's taking part or even anyone who just went along to the initial screening appointment and didn't go any further. I want to know what to expect so I can be sure we're making the right decision.... Would be particularly interested to hear any of the downsides / negative experiences. thanks!

[bundle]

the only way you will find out what it entails is to go along or phone up and chat to someone involved in it. why are you particularly interested negative things?

[slowlearner]

I've chatted to a couple of members of the study team and read all the info they have sent me so I'm convinced of all the benefits of the study and also the safeguards in place.

I'd just really like to hear the point of view of someone with a child taking part in the study to hear what has been difficult, in case there are any downsides I haven't considered before I sign up and have to travel to London for the screening appointment.

Of course if anyone has positive stories that would be interesting too!

[bundle]

oh

I've met some of the medical team and they seem v nice. V important study

[Habbibu]

Isn't naturopath taking part? See here.

[aDad]

DD2 was signed up for it, as the sibling of a child with known allergies. She went for the first screening appointment when she was only 6 months old I think - and unfortunately among other allergies she was found to be allergic to peanuts, therefore not eligible to go any further.

It seemed very well run - I only have good things to say about all aspects of the Evelina hospital anyway. It's interesting research and from our POV we were grateful to have her as part of the trial as we were just approaching weaning age, and got a full run down of allergies she has.

[aDad]

if you have any questions, do ask, although we obviously didn't get beyond that first appointment, which was basically just skin prick tests, and a blood test. It was DP who took her that day so could point her to this thread if you had any more questions.

Both our DDs are managed there at the allergy clinic, and DD1 is always incredibly excited about having to go - despite having once been admitted for a few days after an asthma attack (you'd think she might have bad memories of it). But I can understand why - lovely staff, lovely place with endless things to do, designed by children.

[slowlearner]

Thanks. It's good to hear the clinic and staff are so nice - to be honest that's probably what I'm worried about most, just that the visits could be an ordeal for dd, what with the travelling, skin prick tests, blood tests etc etc.

[aDad]

Sure, I can understand completely.

I dont know how old your dd is, but with DD1 if you offered her the choice of going to a playground or going there, she would choose the hospital. They have a large helter skelter, a well equipped play kitchen, lots of toys on rotation, even play stations etc.

[aDad]

It took about 2 hours, so not too long - and may have gone on a bit longer for us because once they'd established peanut allergy we had epipen training etc.

[slowlearner]

She's only 5 months at the moment, and would probably be at least 7 months before starting the trial as they want weaning to be established first. The trial runs for 5 years so the helter skelter might well be an attraction in future if not right now!! It's good to hear it's so child-friendly - for some reason I was imagining a bare white lab or something!

[aDad]

In that case playstations and helterskelters not much use! But there is a small baby sensory area and plenty of things to look at.

interesting about the weaning thing, because it certainly wasn't established when we did it - i think dd2 must have been nearer 5 months.

[slowlearner]

They said she needs to be eating at least 6 teaspoonfuls of solids at each meal as otherwise she wouldn't be able to eat the peanut snack if she's in that group. I haven't started weaning her yet so not sure how long it'll take...

[aDad]

ok a quick search to a thread from last year reveals I am talking shit and she was in fact just 7 months as well!

(thank you mumsnet search facility)

[ac27]

My son is 21 months and has been with the LEAP study since he was 9 months, and it's honestly the best thing we could have done for him. He is in brilliant hands with the entire team there, and every time he has had a reaction to anything they've been on the end of the phone, and then have got us in immediately to see them. With something as scary as your little person having allergies, it is just the most indispensable support. And I'm convinced that it's the Study's care that has prevented him from developing peanut allergy thus far.

The Evelina at St Thomas's is an effortless place to visit it's absolutely, no expense spared designed for children and their comfort. My son does HATE the skin pricks and blood tests he wails the place down and my heart almost breaks. But the fact is he would have to have these tests whether he was in the Study or not.

If I were you, I'd sign up immediately!

[slowlearner]

Thanks - I've decided I'm going to sign up. I don't know if we'll definitely be accepted but they have said we'll get the skin prick test in any case which will be really useful. Hope it won't be TOO upsetting.... (for DD or me!)

[ac27]

The skin pricks aren't upsetting at all -- they don't hurt, it's like having your arm drawn on in pen. My son hates them because he's now almost two and just freaks out at a stranger coming towards him with weird things.

The blood tests, however, are grim. Good news is, they don't come along until after you've been accepted into the study -- so your first visit should be completely trauma free. They really are a lovely bunch at the Evelina.

And, another silver lining with the blood tests, they only happen twice during the study, so when they're over, they're over.

Good luck!

[HannahandSeb]

My 22 month old ds is taking part in the leap study and they have been brilliant and I am so glad we signed up to it. All the staff are lovely and so knowledgeable and not pushy at all. All our visits have been in a calm, professional and clean environment.
I have complete faith in them and believe that they really do care about the children taking part. We've had birthday presents and Christmas cards and even a congrats card when our 2nd ds was born which does make you feel that you're not just a guinea pig!
We are telephoned each fortnight and they are always happy to answer any questions.
I've had such good care for my son there compared to the allergy consultant we see every 4 months in our area that I have now asked for him to be referred to the allergy clinic there.
I admit that having the blood tests aren't too nice but it is a small price to pay and without the leap study we wouldn't have found out all the other things ds is allergic to.
I know I sound a bit like a salesman for them, I'm not I promise! If there are any other questions you have I would be happy to answer them.

[cindy0820]

Hi Hannah, I saw some of your posts about allergies, would you please share your experience with me of your experience with the privatr allergist you been to. I also live in Bath, I aldo found the local allergy consultant not good.

[Wigeon]

@cindy0820 - this thread is from 14 years ago, Hannah is never going to see your post above. You either need to PM her, or tag her in your list using the @ sign.