4 PEANUTS eaten by previously anaphylactic child on STOP study - there will be dancing in the streets!

[BlueBumedFly]

Hello All

Back at Addenbrookes today as DD was struggling to eat the peanut butter dose. She is totally abhorrent to the taste and it was making her heave, it is so very sticky and cloying. Bleugh.

So, change of tactic and she went up today and ate 4, yes, wait for it, 4 PEANUTS!!

She still hates the taste, I am sure the body knows you know!

Anyway, all is well, slight stomach ache but OK other than that. Next step is the 11 Nov when she will have 10 peanuts!! DH and I will have run out of cooking sherry by then with all the nerves!

I have googled Kerry - and I can still only find one reported death of a child during a nut desensitization trial (excluding trials which related to the use of the Xolair, which I have already said is rather different).

Sorry to be dim. I googled on 'nut trial desensitization death' and varients of this. What search terms do you recommend I use?

What is WITH her?

She's insane I tell ya

LOL KM. 'springerlink' says it all really, and the article was about injections of a vaccine for hayfever, not a controlled allergy test.

Oh and just for the record in these tests the crash trolley containing all rescusitation equipment and drugs are within reach of the patient at all times. All staff are well trained usually in advanced life support. I feel Blues children stand a much greater chance long term, as your children will never know when and if an exposure can kill them and will be stifled later in life.

no need to be so nasty to Kerry - if you have ever watched your child have an anaphylactic attack you would be pretty nervous about any risk of them having one again. And there have been deaths attempting to "cure" allergies, even if it's not alot. One reason it isn't greater is that no-one would try for years because of the risks.

Although I'd like my child to try this now it seems like it is working I wouldn't have wanted to be the first one to try it either. BBF was very brave and so was her child. They are still being brave and its great that it seems to be paying off.

BBF do you have any idea when they will stop increasing the amount? To go from 4 nuts to 10 is quite a big jump. How long will they let you keep your epipens if that seems to be tolerated OK.

It is only because Kerrymum is implying that BBM is a terrible mother for doing it that we are turning on her.

BBF has obv watched her child go through the same as KM. They have taken different paths, but whilst BBF is letting KM go her own merry way with her choice, KM is coming in ranting and telling her she is going to kill her child. Live n let live is needed from BOTH sides.

wind your neck in - she was defending you! as in "if you have seen your child in a' shock like KM has"

cross posts

I said implied

Goodness me this has all gotten a bit nasty now. KM - I understand you urging caution, but really, its ok. We are not a family of numb skulls who have gone into this blind. We are not obsessed with creating a child who is no longer anaphylactic as you seem to keep posting, we are trying to improve her quality of life.

Thanks to all the people who have sent their very best wishes, we appreciate your support as ever. DD is one brave and special little girl, I don't think I could be this brave.

So, given the chance I could upset someone again I am STILL going to post on the 11 November to tell you how it is going.

Good luck everyone, stay well and hope you LOs stay well too. Night!

bbf - please do keep us posted . i too think you are doing the right thing for your dd .

can i just point out google is not the best place to be trying to find the evidence for or against such trials, you need search engines such as pubmed, webofknowledge and medilink. These are where you can search the scientific journals, which is where any trial worth its salt will be published.

BBF - please do keep us posted, it sounds fascinating and will be passing the info onto the group i belong to.

BBF, just wanted to say I have been following all this with great interest as DD (12 months) has various allergies including peanut and I also suffer from allergies. Not sure how serious hers are or will be just yet but I would certainly consider a trial like this in future and am thrilled by your DD's progress so far. It gives hope to all of us!

It's up to each individual to make an informed choice whether to take part in these trials and people should respect your decision even if they don't agree with it IMHO.

FWIW I think you are doing a great thing. It sounds as though it is going really well and if it continues to do so, your dd will be able to live a much freer life and those who care about her will not have to live with constant fear of her coming into contact with nuts.

A clinical trial is controlled, real life is NOT.

Surely it is FAR more worrying to live with anaphalaxis (sp?), I imagine when your dc are young it is easier to control as they are usually with you or in controlled situations, however as they become more independent the risk must be far greater?

Thanks guys, so good to see so many of you following our progress and many thanks to the ones of you who always always send me really supportive messages, it is always very much appreciated.

Like so many of you have said, it is personal choice. I understand that it is not for everyone, I am not trying to recruit anyone to a trial, never said I was. All I am doing is posting progress as I promised I would.

See you on the 11th Nov!

BBF - Great news,the trial sounds very interesting. Your thread has inspired me to make a 're-test' appointment with the allergist for dd2 (6yo). I have so many more questions than 2 years ago when she had her first reaction to peanuts.
I want to ask about trials here in Canada.

Go for it hellish, ask if any of the work being done at Duke Uni in Arkansas is in Canada yet?

BBF wondered if you'd seen this blog about one of the children at Arkansas www.askaboutmypeanutallergy.com/weblog/page/2/

This Ottawa support group doesn't mention any Canadian trials so perhaps none yet www.ottawaasg.com/OASG2006/index.php

BBF, thank you for updating. I have been sharing your progress with some online friends who have children with similar issues. We have all been thinking about you.

It has been interesting to read the alternative view on this thread. I think that the differences can be viewed as approaching life with an attitude of hope rather than with an attitude of fear. I really applaud you and your daughter.

My son was born with a congenital defect that was life threatening. We had the option to manage the condition or attempt a more risky 'cure'. Such a hard decision, eh? We opted to attempt the cure preferring the chance of a normal life for our boy rather than living in fear of a relapse and the limitations on quality of life that implied.

Please do keep on updating, so many people will be lifted by your dds great progress.

Thank you judge - what lovely words, brought a tear to my eye. Hope your DS is well.