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New research(16 Posts)
Apologies if someone has posted this already, but have you seen this, from Glasgow?
Gives me huge hope for the future for all allergy sufferers (and their parents) alongside the fantastic work being done at Cambridge.
That is interesting... what's the work being done in Cambridge? (I don't live in the UK and haven't heard about it.)
Oh, it's fantastic. Dr Andy Clarke has developed a system of desensitising children who have a peanut allergy. It is very early days and the children in the study will need to be treated for 4 or 5 years I think, so the allergy doesn't reappear. I think more children have been treated beyond the first 4 now. This link will tell you more, but it is so so promising. There will also be more people on here who know more (in fact, I think someone on here has a child who was treated...?) Some caution is needed I think as it really new but it is hopefully the first step on a long road for many people.
If you are still about Babybarrister/Beggsie I can tell you more... my SDD is one of the first 4.
I am here and I would love to hear about it! I saw your post on the popcorn thread, and it really made my heart sing! You must be over the moon about it all, and looking forward to your chinese takeaway!
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
That is so fantastic for all of you. I can't tell you how good it is to hear your story. You will know how scary it is every time your lo is away from you and around food. My ds is starting school this time, and whilst the school has been absolutely fantastic, I am filled with fear about the whole thing.
Your sdd should be very proud of herself for sticking with it and being brave, and so should you.
I look forward to your update!
Thank you - will update as soon after Friday as I can in the Allergies section. I always have STOP Study in the title so they are easy to spot and sometimes cause debate! I know, you would never believe it but I have had bad press too!
You are kidding me!! Can't quite believe that! I am stupidly pinning my hopes on this kind of research and it becoming more widely available. Am hanging out for the day they will be able to treat my ds for his brazil nut allergy and I can stop this so**g anxiety!
You are not stupid for hoping for that at all, this is ground breaking stuff but they are gathering speed. Dr C reckons you can desensitize against anything and they are doing amazing work there with other allergens too. I am confident that one day your DS will be able to be treated and in fact his children if they go on to prove at any stage these things are hereditary.
We were accused by one or maybe two of putting SDD at risk, she should live with it, strength comes from within the family, she is a lab rat, other kids put up with much worse, people die of these trials etc etc etc. All most upsetting but also unfounded and utter rubbish.
Crikey - as if you would put her at risk just for research sake? very odd.
Thank you for your very kind and comforting words - it honestly helps immensely.
Nowt so queer as folk as they say! Luckily the other 98% of MNers are very supportive and like you, very excited at this prospect.
We are truly blessed to have been a part of this early study work and Dr C deserves a knighthood for what his is doing for medical research.
Tune in soon for more (fingers crossed!) good news
Sorry I forgot to come back to this thread, but wow that is really really interesting.
My DH has been thinking recently that some kind of desensitisation might be the way to go (I think he'd heard that medical opinion was starting to change in that direction), but I was quite reluctant - although feel quite different having read through this thread.
Do you know whether they are thinking of trying it with other allergens apart from peanuts?
"Do you know whether they are thinking of trying it with other allergens apart from peanuts"
They have used it on dog allergy. Boy on tv the other week who was anaphylactic with a dog in the room was given dog hair starting in minute quantites and built up. He seems to be fine now.
Yes Weta - they are doing all sorts! (Well, not allsorts as in the sweets of course!)
Sorry, long day and I am still working
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