OFC day- 8000 milligrams wheat- down the hatch!
Last week the gluten free boy successfully graduated from the first part of the phase 1 OIT multi allergy study at Stanford-- under the watchful eyes of Dr. Kari Nadeau and her staff. During two days of OFC (oral food challenge) —he was given double the amount of all four allergens. This test determines how much food the person is able to tolerate before an allergic reaction occurs. In Matthew's case 8,000 milligrams of each allergen was eaten without an allergic reaction. Last July he had an anaphylactic reaction to a crumb of wheat (50 milligrams). Last week he was given 32,000 milligrams of wheat, rye, barley and oat combined over two days- no reaction.
Last July his skin tested positive showing huge welts from all four allergens—Last week the hives were present but less then half the prior size.
For Matthew the study began last May with a phone call, then in July a test to prove he was in fact anaphylactic. In August the first of eight bi-monthly Xolair shots began. October brought into our lives oral immunotherapy in very small amounts. November thru March we traveled back to Stanford for up doses of food allergens and vitals checked.
Since Matthew passed the OFC, instead of traveling every two weeks to Stanford, we will make two 6 week check up trips. During these appointments his blood and skin will be tested. A person is considered “allergic” until the skin test is negative—no hive present. After the six week appointments—we commit to traveling every 6 months for two years-and until his skin tests negative.
For the next few months Matthew will continue eating his daily dose of 16,000 milligrams wheat, rye, barley and oat—1 granola bar, 6 rye/ barley cookies and some type of wheat treat—pasta, pizza, tortilla, oreos etc.
It is surreal when we say things such as finish your wheat, do you like the Piece pizza?, which fries are better Weiner's circle or McDonald's?, how many oreos did you just have?, did you like the dunkin' donut holes? Do you want pasta for your wheat tonight or a flour tortilla?
Watching Matthew try new and exciting food is fun but we always remember that Matthew is a participant in a phase 1 trial—this is an experiment. For this reason we remain vigilant about carrying his epi-pen and emergency medicine—we have to be. Nothing about participating in this trial is taken lightly. There is still more to learn, research to be done, more children who need to be desensitized.
The daily constant fear has subsided—he is safe from cross contamination this is the most liberating feeling of all.