2350 mg rye/barley dose 4 cookies per day.
. 75 156. 312.50. 587.50. 1000. 1450. 1950. 2350-- These are not the combination to a vault filled with jewelry. Instead, they are the increased dosing amounts of each allergen my child has been eating daily since last august. He stays on each dose for 2-3 weeks then he travels to Stanford for an up dose.
From tolerating ZERO wheat, rye, barley and oat to his current dose eating 9400 milligrams combined daily is nothing short of miraculous. Or maybe it's the tenacious work of a brilliant doctor and her team- science and research providing real life positive results.
I don’t want to give the impression that life has been one giant dunk with oreos and graham crackers since beginning this journey. The gluten free boy is a lucky participant in a phase 1 food allergy trial- the protocol written by Dr. Kari Nadeau of Stanford Hospital. If someone told me a year ago my child would be eating 23.5 mini oreos a day--i would have thought they were insane.
At first it is incredibly scary to feed your child foods which were prohibited and strictly avoided for 14 years. Then the new normal sets in-
Any reaction at school after eating your oat?
Any sneezes after the rye/barley cookies at lunch?
Did you eat your wheat yet? Feel ok? Itchy eyes? Anything???? Are you SURE you are ok? What was that sneeze?
Just as we were getting a little used to administering the daily dose we got a reality check.
He might have been at the tail end of a cold- Oat eaten in the morning without incident. Barley eaten after school without incident. Wheat eaten around 10:00 pm without incident- then came the itchy hands. Sneeze. Runny nose- it's not his cold, that's done. Sneeze.
Call the SAFAR emergency number.
Is his lip puffy? Sneeze. Give Zyrtec. Sneeze. Give another Zyrtec. Yea, his lip looks puffy. He's definitely not comfortable- no breathing issues. Give Benedryl.
As Dr. Nadeau calmly and precisely described to Matthew what was happening- he began to relax. She explained that these small reactions are to be expected. If he wants to completely stop this reaction he could take the epipen.
Epi in- reaction stopped almost immediately. Tired from all the medicine he went to sleep. We checked on him throughout the night to be sure a secondary reaction didn't occur. It didn't.
Kari's instructions were to cut his wheat dose in half for the next three days. In addition he should keep pre dosing with the antihistamine Zyrtec before the wheat portion of his dose.
That incident happened almost two weeks ago. We have done exactly as instructed and no reactions since.
Next week another visit to Stanford and hopefully an up dose to 3000 milligrams each allergen- 12000 milligrams combined!
Matthew was also recently instructed by Kari to venture out and try new things—not just mini oreos. Incase you are wondering his next dose will be- 1-1/2 granola bars, five rye/ barley cookies and 27 mini Oreos!!!!! Yep—gotta try some new stuff—that’s A LOT of oreos☺