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.