Anaphylactic Peanut Allergy STOP Study Results - FINAL CHALLENGE PASSED! 12 Peanuts today and no problems

[BlueBumedFly]

Blues News!!!

As promised, I am doing my final update on the STOP Study for the next 6 months.

DD was at Addenbrookes again today for her final appointment and her final nut challenge. She went with DH so have been on tender hooks all day long.

Anyhoo, she had 12 whole peanuts today and was totally fine. She is now on a maintenance dose of 4 peanuts per day for the next 6 months then further RAST tests to see how far she has progressed.

We are totally over the moon.

I am off to do the Nursery run and will be back on line after 7pm. If you have any questions I am more than happy to answer them later tonight.

Many thanks to all of you who have shown us so much support over this trial, there is so much hope on the horizon for nut allergic children. I cannot wait until the results are published later in the year to show that immunotherapy carried out to the correct protocol in hospital conditions can give amazing results.

I think I can feel a glass of wine coming on!

This thread has given me great cheer! Thanks for posting the final update.

Congratulations on the final challenge.

Hi BBF. Congratulations to your DD, that is such fantastic news.

was talking to my teenager about this and they said they wouldn't want to eat peanuts each day because they smell horrible. I suppose I should be pleased that they don't see their nut allergy as a great problem but I really wish they wanted to go though the programme.

blue- great news about the challenge. Can I ask how old your dd is?

I have dd (6) who is anaphylactic to peanuts, she is going through a very anxious phase at the moment. I don't think she would be able to do this sort of program as I think she would be terrified of the challenges. Did your dd suffer with fear? and if so how did she overcome it?

My DD is 10. I think the youngest child on the study is 7 or 8.

She was fearful but very driven by the thought of being allergy-safer if you get my meaning.

However, she does love her food so the thought of being 'allowed' to go into a bakery for the first time in her life and choose a donut for a treat was overwhelming!

Also, I guess by 10 she has been exposed to enough parties and social events were she has felt like a bit of an outcast as she cannot touch any of the food as it was not clear if it was safe. Some people go over the top in her little mind and she gets extremely embarrased by people delivering her a 'special' plate of food made especially for her when all the other kids are just digging in. In actual fact these very kinds parents are just being wonderfully sensitive but she can get angry with us when she is put in this position.

She also loved the Doctor that ran the trial, she very quickly grew to trust him and she has serious trust issues so this was a biggie. She just knew the doc would not put her at risk and used that as her determination.

Also, she felt part of a special club. The kids on the trial are on a Yahoo group and she is the leading girl in the country now so she feels that she can now help other kids which is a real biggie for her.

We took each appointment one step at a time, made it clear she could withdraw at any time. We had one wobble and missed one appointment but then she came back and asked to start again and it has been plain sailing ever since.

If you want to talk off post let me know and I will let you have my email.

Oh good for her!
I know what you mean about the donuts! My ds has never eaten so much cake!

I just cant imagine watching her eat 12 peanuts!

wow.

wonderful!

Williamsmummy - it is freaky believe me!

Thanks BBF I told dd all about your dd and she was very impressed. She said it would be scarey but worth it. She laughed when I told her your dd doesn't like the taste of peanuts but still has to eat some every day.

I am so glad you mentioned trust issues - dd has stopped trusting everyone, even me really, she makes me read labels over and over again, and is really very anxious about lots of things.

At the moment I am having to go into school during lunch to sit next to her as she kept becoming hysterical. I am hoping to cut this back gradually but I feel that she needs this extra support at the moment.

Inspired by your thread, I have made an appointment (couldn't get in till Feb) to see the allergist again.

Thanks

BBF will your daughter have tests for her other allergies as well? Was/is she allergic to tree nuts as well and do you know about the nut tree allergies of others in the study? Sommetimes if you take away one allergen people deal better with the remaining allergens, just wondering iif that works for desensitisation.

This technique has been used for things other than nuts before.

Wow BlueBumedFly.. thats really good news

Berrie, my son had an egg food challenge at Basinstoke hospital this week, he was ok with egg white but reacted to a teaspoon of egg yolk, he came up in hives on his body, they stopped the challenge imediately and gave him some anti histamine... the hives soon went down but we had to wait at the hospital for a further 4 hours in case he went anaphylactic...

I need to find out more about delayed anaphylaxis and returning sensitivity. To be honest I think we buried our heads in the sand after the diagnosis and I didn't do a great deal of research because I didn't want to know.
Ds is obviously still allergic to peanuts but we didn't ask questions about the risk he is still at. It was a long day and our hopes had been so high. We'd seen him eat peanuts and nothing dramatic happened. Surely they'd follow him up if there was a risk that the challenge would re sensitise him?

Brilliant news! I can only hope that because you were all brave enough to take part in this study, one day immunotherapy will be a real option for allergy sufferers - DS has anaphylactic reactions to cow's milk and the day they do something similar for milk we'll be first in line...

Hellish - sorry your DD is having such a hard time of it. Have you tried getting her to cook with you? Perhaps if she helped cook some things it might renew some confidence? DD loves to cook her own cakes etc and she knows that they are really safe.

Good luck, hope you continue to make progress with her xx

Tatt - at the start DD was allergic to all the nuts tested for and half way through the study she came up negative for tree nuts with the exception of cashew nuts. Amazing that we cleared away a whole load of nuts in one go! She will eventually be retested for all other allergies once the peanut one is done in April.

RumMum - how scary for you. How old is DS? Is there a chance he could still grow out of it?

Berrie - if he has tolerated peanuts than that is wonderful. Perhaps a final RAST would put your minds at rest? I am sure he is making excellent progress thou and like you say, the hospital would have been alerted to a resensitization. If it were me I would ask for a final blood test to be sure of the playing field you are on. You never know, it maybe a 1 or 2 and you can really relax.

Mum68 - we can but hope. Allergies are really making their way up the medical ladder, it just takes one inspired doctor like this one to make a real difference.

Hi BlueBumedFly, DS is 10 now and is also allergic to dairy and peanuts as well as egg.
he had a skin prick test and blood test (rast I think they called it) came back that he was almost grown out of it, they will do the egg challenge again next year.
We were meant to last week for his egg challenge but he accidently had a bite of a sandwich with butter in it, I gave him some clarytin straight away and his lips came up red with a few hives... nothing major so I was quite pleased, BUT the clarytin meant he couldn't have the test done for a week as it may give a false result.. they were also going to do a challenge for dairy but said he wasn't ready after the butter incident...

RumMum, how frustrating for you. If you are anything like us you want answers and now!!! Good news that he may have grown out of the egg allergy, hopefully that means his body is coping much better with allergens.

Also, if Clarytin coped with the butter then that is good news too, hopefully he is getting stronger and stronger.

One thing at a time though eh? Get the egg out of the way, get that one posted as a success then concentrate on the dairy. Slowly slowly catchy monkey as they say (or monki if you are like my husband and come from Wolverhapton!)

Is he anaphylactic to peanuts or allergic? He most definitely seems to be going in the right direction though hun. It is a long and drawn out process but hopefully ever day he is getting safer and safer.

thanks BBF, that's very promising.

Wouldn't be too reassuring to Berrie - the hospital haven't done RAST tests and don't seem to have mentioned maintaining oral tolerance by continuing to eat the allergen regularly. So they don't seem aware of possible resensitisation.

In the families I met I think (it's a while back) they'd either not been warned to eat the allergen regularly or the child wouldn't do it. Hopefully it doesn't happen if you continue to eat the food.

Sorry tatt you are right. Caught up between wanting to help and not wanting to pee on peoples fireworks, wanting to raise awareness but at the same time not scare the living heebie jeebies out of anyone.

sigh< such a minefield.

DD has eaten foods with warnings on all week, breakfast cereal, museli bars, even a Fab ice lolly as a treat and not one hint of a reaction. We are overjoyed. Keeping on with the daily peanuts!

Amazing news, I've been watching the thread before this one for news. Doh, glad it went well BBF.

BBF do you have a link with details of this study on? My friend's child is severely allergic to nuts and I'd like to pass on some info to her.
Thanks.

Hello MadreInglese - I don't have online details as I am not at work till Monday, however, all you need to do it call Addenbrookes Hospital in Cambridge and ask for Dr Andrew Clark. Here is the hospital number:

Dept of Allergy & Clinical Immunology Addenbrooke's Hospital CB2 2QQ. Telephone: 01223 217777

If you have no luck there email me at mellie and min at aol dot com and when I get back to work on Monday I will send you all the details.

For the record DD is still having 5 peanuts a day and is doing really well. Out lives have changed,,,, in fact I might post again now with an update!