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!

oh and i know i should juts do a search but do you a link to any info on the study? its just my daughter suffers from a rare skin condition and whilst hers (fingers crossed) doesn't have an anaphylactic response other children we know with it do and i'd like to let them know about the study.

hollyandnoah - many thanks! It is a huge relief, keep on keeping on as they say!

Iorek - The Doc has published mid-study results already at conference and it was received very positively. The Doc had to fend off many questions from other amazed Docs. DD was the last of the first 8 children to get to the study endpoint. So, I am guessing some time in the new year. I will be sure to post though!

Sycamoretree - thanks for your kind words, you are right, people do want to know and I am not going to be put off in my plight to help other families who are suffering.

katz - I don't have a link but if you ring Addenbrookes in Cambridge and ask to speak to Dr Andrew Clark.

Katz (previous post) to be honest we don't know yet. She will be on 10 peanuts a day once we get to that stage for 6 months. There is a chance she could have to take this amount every day but there is the option of capsules now as well I think. What a break though! The doc should be sainted!

It does sound amazing BBF. What's the final aim, is it to be able to eat nuts normally, or to just not have to worry if she comes into contact with nuts accidentally (either of which I can imagine would be massive steps!).

this sounds really thrilling.

I am allergic. anaphylactic allergic, to tree fruits and dairy, and as of yesterdays blood result, hazelnut (which in effect means all nuts bar peanuts as peanuts are not 'nuts', but legumes, I have now been given to understand by my consultant).

anyway..................eating out is dire, going to friends a nightmare, and I am losing weight (1.5st at last count) as when I am alone I am often too scared to eat, just in case (even tho logically I know I am safe as I am preparing it myself).

I would love it if I could eventually take part in such a study myself......and FWIW (aimed at KM), tummy ache would be an ok thing for me to live with compared to the possibility of dying thro allergic shock. I think the positives FAR outweigh the cons here.

feel thrilled

I am very interested to hear about it
Sounds v exciting that it is working

Thrilled for you and all other parents of anaphylactic children! Sounds a very exciting breakthrough.

JimJam - the final aim is to not have an attack to accidental exposure. We never meant for her to eat a snickers bar, we just meant for her to be safe. Simple things you know, to eat from a fresh bakery, to go on holiday and have food from a buffet, to go to new places and not be singled out. She starts a new school next year and she really wants to go as a normal run of the mill kid, not have to keep telling people all of the time and have to sit away from others at lunch etc.

Psycho - I do feel for you hun, hopefully this will soon be available to everyone.

BBF - that is such fantastic news I really hope this works out and offers hope to so many parents out there.

We were very lucky that dd outgrew her allergies (to some fish, eggs and sensitive to tomatoes) She can now eat what she likes and even now I watch her eat with such amazement and relief - its the best feeling in the world.

Psycho - thats rotten for you

blue - thanks, good luck for the future, a small capsule of peanut protein every day will be a small price for a 'normal' life!

well.....you can feel proud that your DD was one of the first then, when it is noted around the world and suggested to all severely allergic people (and not just children).

for me, it would mean relaxing when out and just being able to eat without having to check out the restaurant before we go, to stop haivng to look at every ingredient list......just to be able to go have coffee and cake again!

and not feel as tho I am a freak (as DH kindly called me yesterday)

sheesh keryy
you really do have a pesimistic outlook on lofe at the mo
Are you having problems
Maybe you would like some support
you could post for support instead of pissing on someone elses good news

Psycho - it is so hard and getting harder. I really object to massive companies like (bloody) Tesco (see BBF spit on the floor) putting nut warnings on a lettuce!! They should be made to be more responsible by the government.

BBF....it has gotten crazy with all the allergy warnings now.

altho, I still giggle when a bag of peanuts has on the side, or tuna has

I mean, do they think we are that idiotic that we don;t know????

Fantastic news for your dd I hope it all continues to go well when she gets to 10 peanuts. Sharing information on new developments, especially successful ones helps others with the same problem.

kerrymum Your negativity is astounding considering your dc has a similar problem, I would have thought you would receive positive developments with enthusiasm. This treatment will save lives if it works, anaphylaxis is far less dangerous in a controlled environment where rescusitation equipment and medication is on hand, than if it takes place at a Birthday party without knowledgeable professionals to intervene. A slight stomach ache during testing is far preferable to the latter. IMHO you are being very shortsighted in your approach to Blues news

oh, and trinity........you were remarkably kind in your post to KM

Mytether - 'Blues news' I like that! I could start a Newsletter!!

kerry

Anything for a better quality of life for your dd. I would do the same, good on you.

Yes, I'm sure there is still a risk even in hospital, but a tiny risk probably even compared to crossing the road so IMO ignore the negatives and keep doing this for your DD. She will thank you when she is able to enjoy the benefits.

It's fantastic that the chance is there to work this out and not just brushed aside and told to just get used to it.

ahhh KM, I am not being mean. I just found tho that you were being remarkably negative about it all, and this really is not the thread for it.

I KNOW how frustrating you find your children, and you do get very wound up, very quickly, if you think they are getting a raw deal, but surely, somehitng like this study is actually a cause for celebration.

AND

just becuase it worked badly for one child, does not mean it won't work ever for other children. and you have no idea if, because of what happened to that one child that you heard of, that this study has not been adjusted accordingly.

:O

MmeJaffa - thanks hun