12,000 milligrams- wheat, rye, barley, oat- 27 mini oreos. OIT with Xolair/Omalizumab part 8. Multi food allergy desensitization at Stanford.

IMG 3745
yep. thats an oreo, a real oreo- 1 of 9 to make daily wheat dose.

 Back from Stanford with another successful up dose this time to 12000 milligrams combined all four allergens- 3000 milligrams of each rye, barley, oat and wheat.

Dr. Nadeau urged Matthew to try new things- the Oreos are still a novelty but 6 chocolate chip cookies, 1 ½ granola bars and 9 Oreos is a lot even for a teenager.

As I started to count the De Cecco penne noodles to make up his daily wheat dose I began to cry—really ball.

When Matthew was 4 years old entering kindergarten I met with his teachers in advance of school starting.

Aside from giving them his emergency medicine and protocol- I was specific about which items would not be safe in his classroom- play doh, raw flour, and pasta noodles (sometimes used for counting lessons). As always I offered to bring in gluten free substitutes for anything they needed. He would bring his own gluten free snacks.

At drop off the first day of school I noticed the centerpiece of the room—a bright red sandbox table filled to the brim with colored WHEAT pasta noodles.

I spent the rest of the afternoon driving around the city buying all the gluten free penne I could find to replace the wheat noodles in the sandbox. That night I spent hours with my kids coloring each noodle with permanent marker.

That was the beginning of his school not ‘getting it’.

In 7th grade when his class went on a weekend retreat I met with the middle school head—it was agreed that I would buy gluten free snacks for the whole group of 43 kids plus teachers- so the kids wouldn’t eat wheat items on the 3+ hour bus ride. (An allergic reaction in the middle of nowhere would not have been good.)

As I was delivering the GF snacks the morning of departure the middle school head was also making a special delivery—a HUGE bag of dunkin’ donuts also to be shared on the bus. I looked at her incredulous; she looked at me- the donuts ended up in the teacher’s lounge.

Fast forward a few years and I am back in my kitchen—again sorting thru penne noodles. This time they aren’t for coloring—they are part of the daily desensitization antidote for my severely food allergic child. 3 grams wheat, 3 grams oat, 3 grams barley and 3 grams rye. Who would have dared think this was a possibility?

 
IMG 3779 1
those giant shells? 2 grams of wheat protein- plus 3 oreos equals the daily wheat dose of 3000 milligrams

  

 
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                                               three days rye/barley dose.

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                                                                                  daily doses in the freezer.
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once again, counting the penne!

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