Hi Beggsie
Well, we were lucky enough to find Andrew Clark through the Anaphylaxis Campaign when the STOP study was very new. We took DD along and she was enlisted, they checked her overall tolerance which was very very low. They then started treating her with peanut flour at a level below her own tolerance. This is 1mg of peanut flour and we mixed it into a yogurt. Once this was tolerated (she never once had an adverse reaction) they took her to 2mg and so on and so on. We had to give her this dose each day in a yogurt and visit the hospital every two weeks to tritate the dose up and up.
She gave up the trial at 5mgs as she could never see herself making it through. We put not pressure on her at all and 2 weeks later she asked to go back. From there it was plain sailing, her doses doubled until we reached 300mgs when the flour is too volumic to fit in a yogurt so the first time you have nuts is as a quarter of a slice of toast with peanut butter. OMG, as you can imagine it took a lot of courage on her part (and us!!) but she was fine. The only problem at this stage was that we found out she hates the taste of peanuts!! Some would obviously say this is for a good reason
Anyway, off she went on the next leg of the trial and in November last year she completed the first big test of 12 whole peanuts. She took them in 6 doses, each half an hour apart. Obviously all of this was done under strict hospital conditions with Dr Clark and the anaphylaxis team right on hand. We went off on our merry way then with her having to have 5 peanuts a day as a 'dose' of which she is still on now. This Friday is her next big challenge of 17 peanuts and her RASTs to see what her IgE is up to. Fingers crossed it will have decreased. As it is she is no longer allergic to tree nuts.
We do not give her any other nuts other than her dose but but no longer have to worry about trace or factory warnings. She can eat whatever and wherever she likes. It is life changing.
We do not know how long she will have to eat peanuts each day for, maybe a year, 5 years, maybe forever but it is no longer life threatening. As she is now 11 and changing schools in September she can for the first time go into a new environment without fear and without having to explain about her allergy. This is not without issues however, she spent her life being the 'special' child who has to be singled out which they find very hard and distressing at the time but once you take that away then they can struggle to know where to position themselves amongst their peers - if that makes sense? We just keep reminding her how great it is and if she wavers on her daily dose or gets fed up we take a trip to a bakery and let her choose something, which of course she could never ever do before.
Thats about it really. I usually post after a big challenge to let the lovely MNers who have supported me through this know how it went so watch out for my thread on Friday (ish).
If you want to know anything else just let me know. xx