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!

How is that worse?

BBF this is excellant news!

fwiw, if baby developes eczema (due in 5 weeks, i hope she has perfect skin) we are contacting the LEAP project at st thomas's for research. its investigating the link between eczema and peanut allergies.

Peter was part of a medical trial. It saved his life.

Going through the trial is not for everyone, I would be anxious but I am another mum who is eagerly watching for blues updates because my dd is allergic to peanuts and I'm hoping that this so far uncurable potentially fatal problem can be treated successfully for everyone safely in the future.

I don't agree that it's worse KM despite sharing some of your reservations about clinical trials in general I think it's much better. Doc isn't being funded- but it will still have had to get approval and go through ethics so the study will have been well scrutinised. Funding is the point at which politics usually plays a big part. The doc must really believe he has a good workable treatment.

Good luck with the rest of the treatment and trial BBF.

Most if not all drugs we take nowadays have gone through clinical trials. Surely if we are to continue to medicate ourselves we need rigorous testing to ensure these drugs are safe for the majority. Or should we not bother ?

Ah I think drugs trials do that, but they're not very good at picking if they're unsafe for a minority (which is important too)

But that's a whole different argument. This sounds like a treatment protocol rather than a drugs trial.

I think that this is a totally different argument too jimjams... it is a treatment protocol, no drugs involved unless you call a peanut a drug or course.

Just trying to spread a little happiness!

Hi BBF. Am so pleased for your DD. She must be thrilled. Well done to her and you for being brave enough to do this.

As you know, we have decided to put DS forward for the leap study and we have his first appointment next week. I think these things are really tough parenting decisions and there are no right or wrong answers. Being a parent is about making tough choices, isn't it.

KM, we all have to make our own decisions based all the information available to us. I can understand why you might worry about something like this and you couldn't put your children forward if you had doubts because you need to be able to live with your decision. I have given that lots of thought so I completely understand and respect that decision.

Whatever the morals and ethics of studies, however, BBF's news does sound really positive. I hope that this kind of work does benefit all our allergic children in the future.

BBF as you know I'd love my teenager to sign up for the study but they don't want to.

I'd love it because epipens don't always work. Sorry, Kerry - I know none of like to think about it but sometimes people die after anaphylactic shock even if they get prompt medical treatment. Some of those who don't die have extended stays in hospital. And I know that would be a risk with this study and I was very nervous when I first heard about it. But they are taking it slowly and carefully and I don't think they've lost anyone yet. It's a very carefully controlled programme that starts with almost homeopathic amounts and when they change the dosage its tested in hospital first.

My child is now at the age where they are starting to be interested in relationships. It's easier to form relationships if you don't have to ask what they've been eating before a kiss. Some of the jobs they might want to do are ruled out and almost any job is more difficult because if it involves travel flights can be an issue. Some people have flatmates who deliberately leave nuts around for them and some people are threatened with the sack if they take time off after a reaction. If you are admitted to hospital and you have an allergy you have to take your own food or risk a reaction. One person had a reaction to the food (despite asking a nurse to check with the kitchen) when in hospital after a reaction! I'd love my child to have an easier life. I want them to have a job they enjoy, a family and a life without constant fear.

But I have a teenager and they don't want to do it because as yet their nut allergy is not a major problem to them. It's their allergy, their life and I wouldn't dream of forcing them. (I'm also very happy to see other brave people try it first.)

If they come up with something that works I don't give a if they make money from it. I doubt the NHS will fund it so I'd better start saving now for when my child changes their mind.

oops - should have been a few more there. Still you get the drift!

BBF naturally you are very happy. There is a big difference between a bit of a stomach ache and an anaphylactic reaction. Yes in young children stomach aches can be the first sign of a more severe problem developing but it isn't always the case.

Thanks for the update BBF, I think it is great news.

Kerry, I was interested in your comment that 'kids' (plural) have died during nut desensitization trials as I have only been able to find records of one trials death (in the USA).

I have heard of deaths due to accidental exposure and delayed reaction related to the immuno-suppressant Xolair but that is somewhat different. Can you point me to reports on the others please (genuinely interested)?

Wow, fantastic.

Kerry seems to be spoiling for a squabble and perhaps not very well read on the subject, I am glad you aren't letting her spoil your good news.

BBF, I don't know you at all but come from a v allergic family and this sounds great. So pleased for your daughter.

Kerry, you seem a bit ungenerous to me. OK, so you don't want your own children to do this kind of thing - completely fair enough. Why piss on someone else's parade?

i would like to know more about the theory behind desensitisation as my sister is anaphylactic to peanuts and is now of the age where kissing boys will probably become an issue.

She had a major reaction the first time she ever ate peanuts, which makes me wonder, it's not as if she was ever 'sensitised' so how could she be 'desensitised'? She was born with the allergy and nearly died the first time she ate a miniscule amount of peanut butter aged 3.

Unless children are sensitised in the womb?

Sorry Kerry I'm being a bit dim, I think. That link led me to an article on hayfever. Where should I go from there?

That trial was carried out nearly twenty years ago.

Nice talk there

First two pages I get with peanut DESENSITIZATION TRIALS gets positive results

I don't think there's much point in a quick google if it's not relevant to the situation at hand. Maybe I'm thick, but you're thicker for posting something completely irrelevant. If you don't have the time, I'm not sure why you're posting, frankly.