Our daughter just completed the desensitization clinical trial at New England Food Allergy Treatment Center, and our lives are changed. After 11 years of worrying and rigorously controlling her food and environment, we're able to rest easier. She is now discovering the joys of Chinese food and store-bought ice cream with her friends. She'll always carry an epi pen and will never order food with peanut ingredients, but as long as she eats 3 peanut M&Ms a night to maintain the desensitization, she no longer worries about cross contamination or a small accidental ingestion.
A little background. Our daughter reacted to her first exposure to peanut butter when she was almost 3, getting rushed to the hospital in one of those events all too familiar to readers of this website. We've been very careful ever since, but still she consistently scored a 6 in RAST and at the top of the charts in IgE tests.
Several months ago we contacted the clinical trial at the NE FATC. Our daughter was reluctant at first, but then decided she wanted to try it. The safety record of the trial was excellent, and they've had hundreds of successful outcomes.
The process is this: they use carefully pre-measured amounts of peanut flour, increasing the amount every two weeks if there have been no reactions. The first dose is minuscule: 0.1 mg. The first exposure is done in the clinic, overseen by wonderfully friendly nurses and doctors. We were sent home with 14 pre-measured amounts of peanut flour in little plastic cups. Each night, after dinner that included a good amount of carbs (per the doctor's instruction) we'd mix one dose of the flour with a little pudding and our daughter would eat it. We'd keep a log and note any reaction (there weren't any). Every two weeks we'd go back to the clinic where she would eat a slightly higher dose under the clinic's close supervision (yes, it took an hour or two). And we'd come home with a new set of 14 little cups. After 6 months of this process, she was eating the equivalent of 3 small peanuts.
She successfully trained her immune system not to over-react to a harmless protein, much the way people desensitize their immune systems to other allergens like bee stings. Now she must eat 3 peanut M&Ms each night (after dinner) to maintain the training of her immune system. But it's a small price to pay for a much wider safety margin in her life.
This is real. We are a normal suburban family with no connection to this clinic. We heard about this trial through our allergist. I have no agenda for posting this other than the hope that other families will enjoy similar improvements in their quality of life. And I'm pleased that this allergy is not in fact the unbeatable monster it seemed like when we were first exposed to it.
Our trial was at the New England Food Allergy Treatment Center in West Hartford, CT. I've heard about something similar at Duke but know nothing about it.
NOTE: All of this was done under professional medical supervision, and there are a few other details to the procedure that I've not mentioned. DO NOT try this at home on your own. This post is in no way an endorsement of do-it-yourself desensitization.
I sincerely hope this post helps someone.
By christin28 on Oct 16, 2012
We are in the program now. We are at 383mg and move to 3 peanut m&m's on Nov 10. It has been amazing for our family. Anybody with a PA person in their life, if you can possibly get into this program it will change your life. It's wonderful.