Peanut Desensitisation Study (Addenbrookes) - wanna hear something amazing about 30 peanuts?

[BlueBumedFly]

Hello All

Once again today was an Addenbrookes day for my SDD. I have not gone today but have been having regular updates by text from them.

Soooooo, for anyone who remembers SDD started the Addenbrookes desinsitisation programme in April 2008 and was anaphylactic to peanuts. Her threshold was 1mg of peanut protein. As I have posted over the last 16 months we have been building up and up. Today was her final nut challenge.

So, she had (drum roll please) 30 peanuts. Yup, say it with me, 30 whole peanuts.

All bets are now off, she can have anything she wants and was tucking into a piece of battenburg cake last thing I heard as she was trying to get her nerves back under control to have the all important blood tests done to view IgE etc.

She can eat completely normally now as long as she keeps to her 5 peanut dose a day. She can have Chinese Food, Indian Food, Thai Food, Christmas Cake, Wagamamas - anything, truly anything.

I am quite tearful. I never thought she would be free of this terrible allergy and here we are, she is free and able to move on with her life, a new school in September without having to be singled out, scared of eating out, embarrassed by the allowances that have had to have been made.

The Dr in charge deserves a knighthood for his work in medical research and changing kids lives.... so, a letter to the Queen?

Questions please.....?

I bet she will be pleased when she doesn't have to have her daily dose any more. Does she still hate them? She is very brave to go through with it and its much apprecited by everyone who (hopefully) will be able to benefit from the study.

Noodle - yes, she still hates them!! I think that she is very driven and incredibly well supported by the team. I think she is looking forward to her month off them!

I think she is very altruisic for a child, she is keen for others not to have to live with the allergy and the thought of restriction free chocolate choices tends to help quite a lot. She does love her chocolate for sure !!

We have a 2 year old who is atopic and we won't know about nuts for sure till she is 4. I think sdd is worried senseless her sister could suffer too so all these things help to keep her going.

Oddly becoming desensitized is not without it's issues. A child has to work out where to place themselves in their peer group. They are no longer the 'special' child, it's tough for them to get used too.

That's brilliant news BlueBF!

Interesting what you say about the peer group thing. That had never occurred to me but of course it makes sense when you stop and think about it...

Edam - we all missed it to be honest, never expected it, just thought it would be all celebrations. I know she would not have it any other way it just takes a bit of working out i think.

Guess so. Maybe she can explain to her friends about having to eat five peanuts every day?

Edam, I am sure. Still far to go but wonderful. Think this is the first time in history that she has been away and we have not been worried about food!

Thanks so much for sharing your fantastic news! I'm fighting back the tears that spring up when I allow myself to even think that there may be hope for my DS2 in the future...

Well done to your DD!!!

Amazing. Well done her for being so brave to try, and for the hope she has helped bring to millions.

BluebumedFly - is your sdd just allergic to peanuts or lots of things? Just checking as my ds (1.8mths) was recently diagnosed with a peanut allergy. Maybe I am being very naive or maybe it is just because he is so young and we control his diet, but I didn't think that it would have a huge effect on his life. Have you found otherwise?

Jennymac, in my experience the dietary restrictions (my DS1 is allergic to dairy) cause more problems later, although obviously it depends how serious the allergy is and what the consequences are of an accident.

The problems I have found are: with toddlers, the fear they will pick up stuff from other toddlers at childcare or in group situations; then with older children, there are issues like trusting other people to take care of them at school or friends' houses, birthday parties (the trust issue, the hassle of having to provide food and your child's sense of always being different and never being able to have the same as everyone else - imagine having to watch other kids eating ice cream/cakes/sweets and not being able to have any), birthday cakes at school, outings with friends etc. Going out to a restaurant is near-impossible (we always take food for DS1 because of fears of contamination so there never seems much point somehow), and by far and away the worst thing is holidays, both flights (and I come from NZ so this is a major problem) and eating while away (we always have to go self-catering so we can control everything).

Sorry if this is discouraging - one does get used to it but I have the odd tearful moment and the thought that one day DS1 could be desensitised is amazing and in fact also brings tears to my eyes! Then again, your child may be one of the lucky ones who grows out of it at a young age anyway.

I remember previous threads BBF - and HUGE congrats to you & your dss for being brave and going through with this - what a fabulous, fabulous result

Weta, just to tell you I feel exactly the same as you do. My family is also far from here, a 14 hour flight, and haven't found yet the courage to fly again with DS (nut allergy discovered 2 months ago so not that long..) I dream of the day he can have this des. treatment, he is just 3 and a half...I am so afraid of accidents (absolutely avoid bakeries, cafes, restaurants ... and he was/is such a beautiful eater, tried absolutely everything everywhere ... we cannot longer do that obviously) and also afraid of freaking him out completely with my own fears.. (that are very real, that's the problem) Good piece of advice from my mum was: good looking after is always looking after with happiness, not fear. ... thinking of that has helped me a lot, brings back perspective somehow ... Also believe that the more confident a child is, the better he will be able to look after him/herself, not being bullied to try nutty things at school, etc... so that is our aim at home.

Does it only work on peanut allergies. My DS is allergic to several things but the most severe are seasame seeds and cheese.

How do you feel about the 5 a day dose. What happens if you forget or say your child is ill and can't eat for days.

madrehayunasola - thanks for your comments. I do try to be philosophical rather than fearful, and work very hard to make DS1 feel as normal as possible by providing similar to what his friends have whenever I can. It's more a hassle than anything else (although obviously motivated by fear).

For your flights, I did take DS1 to NZ at 3.5 but had dreadful problems with the food on board, including a reaction. But I would think for 14 hours you could easily take enough stuff with you (for DS1 I know there are organic ravioli sachets that are fine, which I could take and ask to heat up). I do think it's worth finding solutions to these problems so that it doesn't restrict/ruin (!) your lives more than it has to, although it does create a lot of extra work.

The other thing I try to bear in mind is that there are worse problems. Just before we found out about the allergy DS1 was hospitalised for a weekend with asthma (age 7 months) - I was feeling very sorry for myself until I happened to walk past the cancer ward. The allergy is scary, but at least it can be managed, and I'd so much rather manage that than some of the other things children can have. I think it's very easy (and natural) to compare one's situation to other people's, but it helps to compare it with people in worse situations as well as people who have an 'easy'/normal life!

And it's great your son is a good eater (as is mine) - imagine having a child who was allergic AND fussy!! though it must be harder when diagnosed at his age as he is used to having stuff that you now have to refuse, whereas at least my DS1 has never been allowed it...
I agree about the confidence, although my experience with DS1 is that there is absolutely no way anyone could bully him into taking anything with dairy in it (trickery or misinformation is another matter though). He's quite shy and not that confident in some ways, but the fear of a reaction is so strong that he could not be bullied into it (not fear I've instilled, just his own memories of reactions). In many ways I think having an allergy has made him more mature, as he has to exercise self-control and refuse treats that other children are having (though if I hear about it I will give him a lollipop or something when he gets home to compensate).