Anaphylactic Peanut Allergy STOP Study Results - FINAL CHALLENGE PASSED! 12 Peanuts today and no problems

[BlueBumedFly]

Blues News!!!

As promised, I am doing my final update on the STOP Study for the next 6 months.

DD was at Addenbrookes again today for her final appointment and her final nut challenge. She went with DH so have been on tender hooks all day long.

Anyhoo, she had 12 whole peanuts today and was totally fine. She is now on a maintenance dose of 4 peanuts per day for the next 6 months then further RAST tests to see how far she has progressed.

We are totally over the moon.

I am off to do the Nursery run and will be back on line after 7pm. If you have any questions I am more than happy to answer them later tonight.

Many thanks to all of you who have shown us so much support over this trial, there is so much hope on the horizon for nut allergic children. I cannot wait until the results are published later in the year to show that immunotherapy carried out to the correct protocol in hospital conditions can give amazing results.

I think I can feel a glass of wine coming on!

That is amazing, no wonder you are happy. You definitely deserve the wine. How does she feel about eating the dreaded peanuts? Do you know how many others have made it through / if any have had to withdraw?

Hi tatt, always great to hear from you. Only 8 kids on this study and as far as I know all have made it through but am not 100 per cent sure to be honest. . She hates the taste of peanuts thou, however she has the final goal firmly in her mind on the bad days.

That is great news, bluebum. Your dd sounds very mature and determined.

thanks blueshoes, she is certainly determined!

That is amazing, and a fabulous first study.

Could she have peanut M&Ms as her maintenance dose so that they are more palatable ?

cm - you genius!!! I am going to check with the study doc!!! You star, I think I love you.

Peanut MandM's sounds a brilliant idea, just what you need to encourage other children to take part. I think you said they presented this to other doctors who were interested? Unfortunately we aren't near any decent allergist so it's going to take a while to spread here - wonder if I can get dd to Cambridge university .

Did your child have other allergies? I'm wondering if it would work with things like soy or lentil and if desensitised to those first would that help with peanut (because the proteins are similar).

Still very definitely a "don't try this at home" as they started with almost homeopathic amounts of peanut.

One question: have your dd's RAST/skin prick results altered during the study do you know?

Tatt - DD was intol to eggs as a small child but grew out of it. She is intol to soya in large does but can tolerate it as soya lethicin as an additive. She is not great with dairy but not allergic. She is allergic to House Dust Mite, Timothy Grass, Cats and all fluffy creatures and ... hmmmm, not sure if I add nuts now to the list or not!

Spoke to Dr about peanut M&Ms problem is you cannot see the size of the peanut and we don't want to get the dose wrong. So, we are now on the search for salt and vinegar flavour! They have to be roasted nuts apparently.

WB - they tried to take blood yesterday but DD is quite 'squishy' and they could not get a vein to present so they have left if for now. She was so tired and emotional already they saw no need to distress her. They will take RAST bloods in 6 months to see how she has altered. Skin pricks not really relevant now as she is too far down the diagnosis route, it will be all bloods from here on in.

Hoochie - many thanks!

This is interesting, my dd has a peanut allergy.

Can you (briefly) explain what it's about? Is it reversing the allergy in some way?

Hi Two - it is an immunotherapy programme based at Addenbrookes Hospital in Cambridge. DD had a RAST of 100+ and some of the kids started with a RAST of 150+. She was challenged with a nasal spray last February and then given trace peanut protein in chocolate to check her threshold, which at the time was pretty much nil. From there she had 2 weekly appointments until she could tollerate 1mg or peanut flour which contained half a mg of peanut protein, this was taken in yogurt or similar. As she tollerated more and more her dose was raised at each subsequent appointments, we did go up and down around 5mg for about a month then she really got going. By September she could tolerate 800mg of peanut flour so we were ready for the first challenge of 4 whole peanuts. I really need to stress that this was all under hospital conditions with a highly specialized allergist. She pased the first challenge and we had a home dose of 2.5 peanuts each day. Yesterday she had her final challenge of 12 whole peanuts. Again, I need to stress (for other people who have critisized us for placing her in the study) that NO REACTION was induced during therapy. She is now on a dose of 5 peanuts a day and we can now not worry about 'trace nuts' on factory warnings. She will have blood tests in 6 months (after the daily dose every day for 6 months) to see how she is faring with her RAST scores.

It is life changing. She can eat in a restaurant, go to a party, eat a Mr Kipling Mince Pie if she truly wants too! We cannot give her any foods that 'contain nuts' just the ones with trace warnings.

Thanks RubyRedMist!

Thanks for the info.

When we discover dd was allergic, it was 12 yrs ago, she was 1 at the time, we were told that on the scale 0 - 6, where 0 is no allergy, 6 is seriously bad, she was 3.

Have never been given any advice to have her retested, and were told at the time "Avoid peanuts"

Is RAST scores the measurement of allergic reaction?

Sorry for the questions, but it would be lovely if she could, as she gets older, go for a curry or Chinese meal without worrying!

Hi Twoluv

Does your DD have epipens? The specialist say that an allergic reaction which is had from one to two years could change by the time they are three years old. I would most definitely have her retested. If you see your GP and ask for a referral to see an allergist for a retest, it is well overdue for your DD I would say.

What sort of area in the country are you in? anywhere close to Cambridge?

Yes, the RAST tells you how allergic you are, I am dashing into a meeting now but will post in a bit with a scale if I can track one down.

I would def get a retest thou.

This is so amazing, congratulations to your dd and you!!

thanks, bluebum

she has epipens, but never had to use them!

only had peanuts twice, first time was when she was 1 and was covered in urtecea (sp - know it's wrong but cant spell it ever!)

2nd time, she was given choc covered peanut by well meaning idiot friend. and vomited it out and had the same rash where the vomit touched her chin.

live no where near cambridge - in the rolling south west

That's great news but it leaves me confused and a bit worried.

Ds had a peanut challenge a few weeks ago. I think a rash started almost immediatly but they didn't stop the challenge until 2 1/2 peanuts and a definite reaction. Because he didn't get to 5 peanuts they are undecided about whether to take the epi-pen away and have still not given us a decision on that.
We have been told that we don't need to check packets any more. As you say that's great but someone mentioned 5 peanuts and no packet checking.
He has neer had a RAST test.
The consultant said that the epi pen decision is as much up to us as them but we really didn't know which way to go when he asked us how we felt.
We are at Leicester.

Berrie - hmmmmm, who did the test? Was it at a Leicester Hospital. With DD we had no reaction what so ever, I am a bit shocked to hear they pressed on with your DS even though a rash appeared. Was DS upset?

Can you get to Cambridge to see Dr Clark at Addenbrookes? You could have the opportunity to try to have DS desensitized which we have experienced as well controlled and safe for us.

It is not fair to leave you guys hanging like this, IMO you need a more controlled test. Do you want Dr Clarks contacts?

No no, they didn't press it on him. It was just that I thought there was a bit of swelling right away but it wasn't clear cut and it was only when I saw the bigger reaction that I suspected that it had already started. They were quick to stop things once he was obviously starting to get swollen, blotchy and itchy.
I really would like to know about the epi-pen though. Obviously we still have one but I must say that having seen him eat 2 whole peanuts and not having an anaphalactic reaction, we've already started to get lax about taking not out and about with us. In retrospect a clear cut descision would have been better for us and I need to chase them.

Cambridge is too far for us I'm afraid, thanks though.

Berrie I have met parents whose children (more than one family) passed a challenge only to have anaphylactic reactions later. The assumption is that they were resensitisied by the test. If you outgrow a nut allergy I think you are still told to eat nuts every day, as BBF's child will be doing. So given the choice hang on to the epipen for a time.

Thanks Tatt.
No-one told us that. I don't feel quite happy with where we are at.

berrie Hun I would go back and get better answers xx