Matthew has reached the protocol goal of 4000 milligrams per each allergen! Last week he successfully up dosed to 2 whole granola bars (oat), 1 whole piece matzo plus 3 oreos for wheat and 7 huge cookies made form rye and barley. If all goes according to Dr. Nadeau’s plan he should maintain this dose of allergens indefinitely.
Someone recently asked me why we bothered desensitizing with rye and barley? Why is because both grains are ingredients in more foods/drinks than one might think.
Rye and Barley are grains used in many soup recipes, commercial crackers and breads. As long as Kari Nadeau is willing to desensitize up to five allergens- it would have been crazy to miss this opportunity.
Things for Matthew have come full circle in the food department. We discovered his allergy when he was just 8 months olds after his first taste of Gerber mixed baby cereal. Lucky for me, the doctor on call was calm and gave us clear direction on how to proceed. “ Stay away from wheat for a while and lets see what happens. Call me back if the Benadryl doesn’t make the hives disappear.” That was it—no fear was instilled, no alarming rush to the ER. In retrospect an ER visit was probably the right thing to do.
We continued in ignorance for a few more years- from 8 months to 4 years old he had a bunch of “just hives” again nothing that Benadryl couldn’t take care of. Ignorance is bliss. When the teething frozen mini bagel gave him hives around his mouth- I remembered the “wheat thing.” When the Chinese food from our favorite restaurant gave him hives around his mouth- I remembered the “ wheat thing”.
When his 2-year-old hands touched the conveyor belt at the local grocery store and his face swelled up in hives- I remembered the “wheat thing.” After that ER visit I went back to the store- there was a flour bag spill on the exact belt we visited earlier in the day.
After the French fries he ate at a Labor Day picnic caused his body to turn beet red and swell up with hives—I remembered the “wheat thing”. We later learned that some commercial fries are coated in wheat flour to prevent sticking.
For the first four years “only hives” was what we dealt with. Then came the tainted corn tortilla. The ER doctor was the first doctor in FOUR years to explain cross contamination and flour spills. He taught us to read EVERY food label. He suggested asking for the chef directly at a restaurant. Dr. Evans told us our child should always be 15 minutes from a hospital emergency room. He was calm, thoughtful and reassuring. “Use common sense. Your child has an anaphylactic allergy to gluten.“
What the hell is gluten???
Last week Matthew came full circle when I made him fajitas using normal flour tortillas. It was an emotional moment—the tortilla was at the beginning of our allergy experience and now the tortilla is part of his desensitization. One normal size flour tortilla is 4 grams wheat protein—so no oreos that night!
Next week we travel back to Stanford for the Oral Food Challenge- this takes place over the course of several days. His blood is tested, skin tests performed and they bring him up to 8000 milligrams of each allergen over a period of many hours- to see how much he can tolerate.
We are forever grateful for finding this study. And forever remembering when he reacted to 50 milligrams back in July.