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

(40 Posts)
BlueBumedFly Fri 31-Jul-09 13:17:16

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? wink

Questions please.....?

reikizen Fri 31-Jul-09 13:19:20

Wow, that's incredible! I had no idea such a study was taking place. What a wonderful gift for you and your dd! smile

GetOrfMoiLand Fri 31-Jul-09 13:19:21

That is brilliant. I remember reading about this ages ago. I bet you can't believe it.

A great result for the doctor involved, and the hospital.

BlueBumedFly Fri 31-Jul-09 13:24:47

Thanks guys, we are of course over the moon. When she was diagnosed at 2 we thought it was for life, what a turnaround. Totally thrilling, now, where did I put that Chinese takeaway menu........

stealthsquiggle Fri 31-Jul-09 13:25:05

I heard a report of the study on R4 the other day (having already seen reference to it on MN) - it sounds great. Is she going to be part of the long-term 'what happens if you don't eat your daily dose' study as well?

BlueBumedFly Fri 31-Jul-09 13:28:44

Stealth, we are sticking with the dose for the time being. She has come so far and we want her immune system to play catch up and for her to be able to lead a regular 11 year olds life. Enough hospitals for now we think. I am sure there will be more questions in the future of her as we do need to know if this is a 'forever' thing. At the moment we are just reeling.

stealthsquiggle Fri 31-Jul-09 13:52:58

Indeed - I can understand that. Eating 5 peanuts a day without fail in exchange for being able to relax and enjoy life and food and starting senior school sounds like a miraculously good deal for her.

BlueBumedFly Fri 31-Jul-09 14:47:20

Absolutely!

noodlesoup Fri 31-Jul-09 18:46:02

Excellent news! Do you know if Dr Clark has a private allergy clinic? I am trying to get a referal to addenbrookes but GP won't do it until we have seen someone else locally. I didn't have much joy with the local pead last time but there is a new one with 'an interest' in allergies.

Do you know when you will get the IgE results?

Do you know how the others on the study have done?

I would love my ds to be able to have battenburg. It was my fave when I was his age.

BlueBumedFly Fri 31-Jul-09 19:50:36

Noodle - not sure if he has a private clinic, we just called and asked to be on the trial. He was very open to us just joining.

I am not sure when IgE will be back, will check and repost for you.

There were 11 on the original study, all who have gone past 12 nuts and most I think are onto this final stage. One boy had a Chinese Meal and a Snickers Bar to celebrate!!

My fave was battenburg too, we used to call it Window Cake!!

brimfull Fri 31-Jul-09 20:15:55

Wow that is such good news,what a relief for her.

My ds and dd did an egg allergy study with Dr Clark .

He is lovely

Want him to do a tree nut one now -here's hoping Dr Clark carries on getting funding for his great work.

OrangeFish Fri 31-Jul-09 20:19:45

Fantastic news.

BlueBumedFly Fri 31-Jul-09 20:59:51

ggirl - he is just lovely eh?

trixymalixy Fri 31-Jul-09 22:02:57

Wow that's fantastic news. It's so exciting for all of us with allergic children and gives us hope for the future.

BlueBumedFly Fri 31-Jul-09 22:17:02

Trixy, it's so great, I am confident it will all gain speed from here on in and let's hope funding!!

tatt Fri 31-Jul-09 22:23:14

After the terrible experiences your SSD had at school it's really great that things are still going well.

Have just com back from Australia where nearly everything had a "may contain nuts" warning. On one flight a family sat near us had a bag full (about a pound weight) of peanuts. I asked them not to eat them and they rather grumpily put them away - and I had a sneezing teenager and worried about whether it would develop to anything worse.....(Just to remind you why it's worth doing this)

ggirl BBF's step-daughter lost her tree nut allergy in this trial too.

BlueBumedFly Sat 01-Aug-09 08:53:45

Tatt- lovely to hear from you. What a stressy flight, I thought people had realized that airlines stopped offering nuts for a good reason!!

The latest news is we do this for 6 more months then a month off nuts completely then more blood work to check where we are at. A long way to go yet but marvelous at the moment!!

madrehayunasola Sat 01-Aug-09 09:24:55

I am in tears too, just by reading your post, congratulations! what a happy day must be for your family ... makes me so happy to know this things are possible, and yes, many doctors are wonderful and chose the profession for the right reasons. Well done!!!

BlueBumedFly Sat 01-Aug-09 11:03:05

Mad - many thanks. It is just great, she has toddled off to guide camp today and for the first time in her life we have not had to send her with a food parcel. I'll brt she won't even notice the rain!!!

wb Sat 01-Aug-09 11:08:55

So happy for you all. grin

Would be very interested to hear if her skin prick/RAST has gone down in line with her tolerance so please post when you know.

This has made my day, really grin

AitchTwoOh Sat 01-Aug-09 11:11:53

wonderful news, well done for being brave enough to try. grin

HuffySpice Sat 01-Aug-09 11:16:31

How amazing!

And brilliant for SDD.

pooter Sat 01-Aug-09 18:52:04

did you see the article about food allergies in the new scientist this week? i think you were mentioned - (not by name though - dont worry)

it was a good article and it mentioned the work at addenbrookes and the four children who had just completed the desensitization trial.

tatt Sat 01-Aug-09 21:30:54

BBf - you can nominate Dr Clark at this website www.direct.gov.uk/en/Governmentcitizensandrights/UKgovernment/Honoursawardsandmedals/DG_067917

It would have more chance if a medical association put him foreward or if some body like the anaphylaxis campaign got involved.

carbooty Sat 01-Aug-09 21:39:06

Bluebum,

Just wanted to say how brilliant that is, it must have been a constant worry for you and your daughter - I am really chuffed for you!!

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