Peanut Allergy (Anaphylactic) - life changing study taking place and DD is about to eat a peanut!!

[BlueBumedFly]

I have commented on various posts before about this study but thought I would start a new post to get this information out into the forum as it is so exciting.

My DD is 10 years old and was diagnosed with a peanut allergy at 18 months after taking a bite of a peanut butter sandwich. From there she was diagnosed and EpiPens have been carried ever since. Subsequent test revealed she was allergic to ALL nuts (RAST of over 100) as well as Egg. She grew out of the Egg intol but is also now allergic to HDM, grass, fluffy animals and is not great with Soya.

We saw an advert on the Anaphylaxis Campaign site for a study called the STOP Study which is taking place at Addenbrooke's Hospital in Cambridge. We approached the leading Doc and DD was accepted onto the study, one of 8 children who's parents were committed to join.

The first few trips were to assess her allergy levels from new and to test her threshold which was pretty much nil. They then started with a nasal spray and moved onto a piece of chocolate that contained 'traces' of nuts. Both of these made her react and the chocolate made her vomit. She did not have an anaphylactic reaction though and it was dealt with quickly with piriton. From this point we were off and running and she had to take 1mg of peanut flour (0.5g of peanut protein) each day in a yogurt. Every 2 weeks we visited Addenbrookes and they slowly titrated the doses up and up and she is (tomorrow) on 200mg. Wow! What a massive progression.

In 2 weeks time she will be on 400mg and in 4 weeks time she has peanut butter on toast for the first time (1 teaspoon full). It she tolerates this fine she will then take the final challenge of 5 peanuts. It is most likely that she will need to eat these 5 peanuts each day for perhaps a year or more, the first milestone will be 6 months. As this is all new they have no idea if it will be a lifelong peanut eating dose in order to keep the allergy at bay.

But how amazing? A child that could not even be around someone who had eaten a snickers bar half and hour before is suddenly ingesting peanut protein and soon real peanuts.

There is hope, the study takes children from 8 years old and the doctor in charge is hoping to take 20+ children on for next year. If you are interested and your child is younger it may be worth talking to the Doc in charge about when they could start.

The doc is amazing. He is kind and charming and great with the kids and he is potentially changing their lives. All of his medical staff are amazing as well.

We committed to take DD to Cambridge every 2 weeks for a 6 month period but we could be taking action that could save her life in light of how allergic she was.

If anyone wants any more info please let me know.

[wb]

Thanks for that.

Ds1 is only 2 at the moment but I needed your post to give me hope for the future.

Can't post now as cold-filled baby just woken but am following with interest.

[Pimmpom]

How exciting BBF! Good luck to your dd and it would be great if you could update on here.

[Peachy]

Wow

well sdone for putting your dd forwards

we're starting a project on early asd dx soon (siblings with asd- the 'sibs' project), ope it is as useful

[JuneBugJen]

Wow. This makes me want to cry with hapiness that this is happening. I have had anaphylaxis to peanuts and other foods since birth and this sounds like such a breakthrough. My ds is 11months and seems to be going my atopic way

Do you know if they are doing tests on adults? Really hope it works for you. Keep posted please.

[BlueBumedFly]

JuneBugJen, I am sure they do tests on anyone who needs it, I do not think it is exclusively for children but you would need to talk to them. If you call Addenbrooke's ask for Doctor Andrew Clark - he is wonderful!

I will keep updating, might need some cathartic typing to keep my nerves down on peanut butter day!!

Peachy - good luck with your project, we have to invest all we can in our little ones to give them the future they deserve.

[SuperSillyus]

I'm so delighted to read this. My dd is 5 and we have to carry epipens everywhere. To me it just means that valuable research is being done and that there is hope for the future.
Well done, it is a big commitment for you and stressfull, but a great opportunity I hope it all goes smoothly.

[JuneBugJen]

Ta BBF will check on this
Good luck

[Habbibu]

Oh, well done! I think people who agree to take part in studies like this are just great - it's so helpful to others, and you could end up helping to save lives.

[BlueBumedFly]

Thanks guys, it is worth all the time and effort for not only our DD but the future of allergies.

The government need to sit up and listen and start funding these studies. This one is not funded believe it on not, Dr C doing this all himself. He hopes to get funding for the next batch of subjects pending the excellent results of this one.

I could rant for hours! It is a subject very close to my heart and people think that a peanut allergy is just a parent being 'over protective' half the time, until you show them the EpiPens and then they don't want you kid at their house as they are too afraid.

There is hope and it is happening so much sooner than we could have hoped for.

[JuneBugJen]

Too true BBF. If you ever need a chat just let me kow. You can rant at me about how uninformed folk are all you like!!!

[BlueBumedFly]

Thanks JuneBugJen, I am going to post after tomorrow's new dose and then again as things progress. It is very exciting and scary all at the same time.

[BlueBumedFly]

Anyone online tonight interested in this info? If not I will tuck myself up with a well earned glass of vino xx

[Turniphead1]

BBF - that is fascinating and really interesting. I am so impressed with you and your DD for taking on such a challenge (in the normal and allergy sense of the word!!).

Please do let us know how it goes tomorrow.

My DD (4)is an egg/milk/kiwi allergy sufferer, so not sure whether this approach will be restricted only to nuts or to other allergens. But so so interesting.

Take care and fingers crossed.

[BlueBumedFly]

Turniphead - many thanks for your words of encouragement. I think Addenbrooke's do all sorts of immunotherapy, not just nuts. So does the Breakspear in Hemel Hempstead. I am sure you will find some help from one of the two? The website for Breakspear is www.breakspearmedical.com. I have never been there but a friend had her son diagnosed for milk and egg there and said they were great.

Good luck, we can all understand what one another goes through just to ease the way for the children.

[Turniphead1]

have to say I find the MN allergy thread a real support. Justifies my use of the rest of the site!!

[Katisha]

BBF how old was your DD when she got over the egg intolerance? DSs (6 and 8) may or may not have - I just never give them egg now so I don't know. Don't want to risk it.

[BlueBumedFly]

Katisha - She was 2. But now she is 10 she still will not touch eggs, it is like her body knows.

DD3 is intol but I am now making burgers with eggs to bind and cakes with egg and so far so good. Can you use them to cook with or not at all? Your Doc should refer your DSs for further tests now? It may be clear and you can stop worrying?

Turniphead - it is a good support, I join every allergy group I can, you can learn so much from talking to other people.

[Katisha]

THanks. It's not a burning issue becase we have got so used to not giving them egg based food, or cakes. But on the other hand I don't want to make them sick by trying something!
It seems a bit variable though - occasionally something will make them feel sick and it turns out to have albumen way down the list of ingredients and then at other times something that unexpectedly had egg in seems to have no impact.

[trixymalixy]

That is really exciting BBF.

It gives all of us affected by allergies a lot of hope.

[BlueBumedFly]

All back safe and sound and DD now on a whopping 200mg of peanut flour. Massive amount of powder, it is going to take a bigger yogurt, will be pleased when we get onto peanut butter!

Next visit in 2 weeks when they will double the dose again to 400mgs!

[JuneBugJen]

Hurrah!!! Cannot believe that. Well done, your heart must have been in your mouth!

[Turniphead1]

Well done to you and your DD! That's fantastic!

[Chandra]

Glad to hear it went well, I will be checking this thread hoping for more good news

[BlueBumedFly]

I know, how brilliant! DD seemed fine and is growing in confidence at every visit, she is very proud of herself

Will post again in 2 weeks when we will be on 400mgs! Will try to keep the same title so you can all find the thread.

[AphroditeInHerNightie]

Been reading this with interest and keeping my fingers crossed for you, but have no experience of peanut allergy, thank goodness.
What bemuses me is the question as to whether any medication is used or is it a controlled introduction of the allergen to build up resistance? Almost a kind of 'peanut innoculation'?
If its the latter it kind of goes with a theory of mine that I developed when pregnant with my dcs- when I was told not to eat peanuts as it might cause my unborn children to develop a peanut allergy.
To me this did not make sense - surely a 'diluted' introduction to such products, particualarly via the placenta, would provide the baby's system the chance to process and tolerate such things.
Of course, I'm no doctor or any kind of expert so I could be totally getting the wrong end of the stick.
Interesting, though, and the very best of luck.