Peanut Allergy (Anaphylactic) - life changing study taking place and DD is about to eat a peanut- UPDATE!

[BlueBumedFly]

Hello again

As promised I am updating on the STOP Study. DD went along to Addenbrookes again this week and her dose has been upped to 400mg of peanut protein which is the final step before her nut challenge on the 28th September when she will have her first taste of peanut butter in over 8 years.

To recap for any new people not following my previous threads, DD2 is 10 and on an immunotherapy course for peanut anaphylaxis. She was diagnosed at 18 months and has carried EpiPens ever since. We joined the STOP Study in February and she has been having ever increasing doses of peanut ever since.

Now, finally we are on the home straight!

Had a scare on Sunday whilst still on the 200mg but nothing too serious and she took it all in her stride. We had gone swimming in the morning and then come back for lunch which I stupidly mixed Tuna and Cherry Tomatoes - lets just load those allergens eh? She had her 'dose' at 4pm as normal but then had a Wii Fit marathon session with her sister when she should have been sitting down quietly for an hour. DP and I had taken the baby to the park for a short while so had not policed her properly. Doh! Anyhow, a few hours later she had a face/mouth rash but no breathing trouble so no EpiPen. I was told by Dr Gideon Lack once that if an anaphylactic child ingests a small amounnt of allergen and then goes and runs around it can double, treble, quadruple the effect of the allergen due to the body metabolising faster when active. Our mistake, however she is fine.

So, the countdown is on and the nerves are getting a little frayed to say the least!!

Hope everyone with anaphylactic children are well and no nasty attacks have come to haunt this week.

Watch this space for the 28th Sept!!

[Shannaratiger]

Wishing you all the best.

[BlueBumedFly]

Thank you Shannaratiger!

[JacobsPrincess]

DH is peanut & tree nut anaphylactic. I've not heard of the STOP study, but shall be googling it now!
Thanks for bringing it to MN attention.

[BlueBumedFly]

Hi JacobPrincess, you may not find it online as this is the first time the study has been run and there was no funding, the doc had to do it all himself.

DD was tree nut and peanut anaphylactic when she started now she is just peanut and cashew nut. All other tree nuts are ok! Wow eh?

For more info call Addenbrookes Hospital in Cambridge and ask for Dr Andrew Clark - the man is a total wonder!!

[tatt]

Thanks for keeping us informed.

Wish we were close enough to go in the week. I have wondered about asking if they could see us at weekends but my child doesn't want to risk a reaction.

[BlueBumedFly]

Hi Tatt - how old is your LO?

[tatt]

teenage - which is why they can't afford to miss school to go. They are also old enough to decide for themselves. I might try and encourage my child to apply for Cambridge university - do they do adults ?

[strawberrycornetto]

I think you and your DD are really brave to do this and its so important. I really hope it goes well on the 28th.

[BlueBumedFly]

Thanks Strawberry

Tatt, poor you, we all want what is best for our LOs no matter how old they are. I can keep you updated and perhaps when the results are published and it shows all the success your teen may think again?
x

[littleducks]

how exciting and frightening all in one go! hope your dd is all alright

[brimfull]

wow good luck on the 28th

ds did the stop study for egg allergy with andrew clark a few yrs ago.

wonder if he would consider him for his tree nut allergy?

[tatt]

Yes do keep us up to date. At the moment my child wouldn't risk a reaction but perhaps as they get older they will see more of the advantages. I'm also hoping that if the trial is successful more places will start to do it.

[BlueBumedFly]

Hi ggirl - would imagine Andrew would be fine to do a tree nut one, he seems to be flying at the moment and getting excellent results. Why don't you give him a call?

Tatt - here is hoping eh? I was suggesting to Andrew that they do a website for the current kids on the study to Blog in so that other children of all ages can associate themselves with one of the kids on the study. I think the youngest is 8 years, DD is 10 and I know there are a couple of teens. I might drop him a line and suggest it again.

[brimfull]

Blue-have you got his email address?

Hw many times have you had to visit,tis a 2 -3hr drive for us but worth it I think and ds is only in yr one so worth missing a bit of school for.

[BlueBumedFly]

ggirl - We are about a 2 hour drive too but it is so worth it. We went twice in Feb I think for the base tests then every other week ever since! It seemed a lot last Easter when we were facing it but it has flown by.

I don't know his email here while I am at home, just have it at work. Can I email you with it? Don't really want to make it live on MN as I am sure there must be some sort of privacy law against it. Can you send me your email to: mellie and min at aol dot com and I will send it back to you once I am back in work in the middle of next week?

[tatt]

like the idea of a blog. It's exams all the way for us for the next few years so would be very difficult, especially as there is also orthodontic treatment going on! I'd have also considered it worth missing primary school for. Do you know if they are doing any adults?

[brimfull]

thnka blue -I'll email you.

[SleepIsForTheWeak]

oh good luck I will watch this thread to see how it goes!