2 weeks of doses- 3500 milligrams each!
Back from Stanford with an up dose to 3500 milligrams per allergen.
Currently Matthew eats 1- ¾ nature valley granola bars for oat, 6 rye/ barley cookies and 1 piece " real" matzo plus 1 ½ oreos for his wheat dose.
The second evening on the 14,000 milligram dose Matthew experienced another reaction. First came one sneeze and then another and another.
We have seen this movie before—the reactions since he started his daily allergen doses have been mild according to Dr. Nadeau. Mild in the sense that there isn’t a worry of anaphylaxis. These reactions are scary to us as parents because we aren’t doctors and our memories of the scary reactions are fresh.
We were instructed to give benedryl, then zyrtec then benedryl again. He was definitely drugged and irritable—the sneezing, red hot cheeks, and stuffy nose began to dissipate. We spent many hours checking on him—to make sure he was breathing and alive.
After the reaction we were told to cut his dose in half for three days- that was almost two weeks ago. So far he has been fine on the 14,000 milligram dose.
The surreal nature of the past seven months is too complex to grasp. A friend asked me yesterday if we completely let our guard down where the allergy is concerned. The answer is a definite NO. Although little things are easier—I do not compulsively clean the counter if I see wheat crumbs and I bake using wheat inside the kitchen instead of outside in the garage. Eating in a restaurant is easier although we still inquire if an item is MADE with wheat. He still can only eat the daily doses given to us by Stanford—cross contamination in the form of an item fried in the same fryer as- would be ok though.
We continue on this life changing odyssey under the watchful eye of the brilliant researcher/doctor who I dared to wish for when I began writing this blog in 2009-
“I am hopeful that somewhere in the universe there is a brilliant doctor or scientist who will someday find a cure for this life threatening and life altering allergy" --February 2009
Tomorrow (hopefully) is the final up dose to 4000 milligrams of each allergen- this is the end goal amount- 2 granola bars (oat), 6 rye/barley cookies or flatbread made of rye/barley, any combination of wheat item totaling 4 grams—that’s the fun one!