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What’s it like to have a child go through Stanford’s food allergy trial?
My two oldest children went through the Stanford food allergy clinical research trials. They both were enrolled in oral immunotherapy (OIT) trials for severe nut allergies. My oldest daughter was actually the first patient enrolled in a multi-allergen study in the world. She was originally enrolled in the peanut study, but when the allergist and immunologist leading the study — Dr. Kari Nadeau — obtained approval for multi-allergens, my older daughter began a multi-allergen study including peanut and tree nuts. Three years later, my younger daughter was also enrolled in an OIT trial.
Back in the early days with my older daughter there was very little data. We were among the earliest patients — the pioneers. It was quite frightening, to be honest, because we weren’t sure the oral desensitization would work and what the outcome would be. We had to move very slowly because of the limited data on safety and because my daughter was having trouble increasing her dose of nuts without having reactions. Originally our goal was to decrease the risk of anaphylaxis (which is very high with nut allergies), but the end result exceeded all of my expectations — both my daughters were fully desensitized to their food allergies, meaning they are cured.
My experience with my younger daughter was more similar to what patients experience now. We moved faster through the trial and it was much less frightening because there was solid data by that point that oral desensitization worked. We were in the Xolair branch which meant she received Xolair injections (a monoclonal antibody designed to decrease sensitivity to allergens) which helped speed up the process.
The basics of the OIT trials at Stanford are the following: once the food allergy is confirmed, patients begin consuming small amounts of the allergen under the careful supervision of the research trial staff. Patients return every two weeks to increase their dose, and if they tolerate the higher dose in clinic they go home and continue consuming that amount at home. The goal is to reach 2,000 mg of the allergen (if your child is being desensitized to more than one allergen the quantity can be somewhat large, but its temporary). After staying on 2,000 mg of the allergen for a few months the patient returns for retesting, and if blood test results are improving then the patient decreases to a maintenance dose. My daughters’ maintenance protocol is one of each nut they were allergic to — 3x per week. This is a small amount— for my oldest she eats three nuts 3x per week, and my younger daughter eats five nuts 3x per week. We have found this small quantity very manageable.
“We were among the earliest patients — the pioneers. It was quite frightening, to be honest.”
The process of appointments every two weeks in clinic, and continuing doses of the allergen at home, is time-consuming and sometimes frightening (worrying that your child will have an allergic reaction). But Dr. Nadeau and her team at Stanford are fantastic and conduct the trials in a safe, controlled way. There is a 24-hour hotline where patients can reach staff if their child has a reaction at home or if they have questions. Dr. Nadeau is amazing at individualizing therapy for the patient and working with children and families to make the trial manageable for them. The research trials have attracted people from many different states (and even different countries) who fly in for treatment, and Dr. Nadeau and her staff work to make it as convenient as possible for them.
And the best of all — once the hard work is over and your child has completed the trial, it is completely life-changing. We were previously a nut-free house, and we worried about every school snack, birthday party, playdate and restaurant visit. It was a very stressful way to live, and also unrealistic in my opinion to expect 100-percent avoidance and no accidents or errors. Now we have nuts everywhere in the house and my girls go out into the world and eat without restrictions or fear.
Michelle Sandberg is a pediatrician and founding board member of Moms Demand Action for Gun Sense in America. She has been published in The Huffington Post and Slate.