research meets real life. OIT plus Xolair part 12.

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half daily wheat dose.

Amazing.
Exciting.
Life changing.
Scary.
Nerve wracking.
Nail biting.
Calm.
Wondering.
Hoping.
Planning.
Pinching.
Baking.
Cooking.
Eating.
Enjoying.
Relaxing.
Normal.

These are the things we have been doing and the feelings we have experienced as individuals and a family since Matthew began the multi allergen with Xolair Phase I trial at Stanford in August 2012.

Daily things are so different now. The danger of cross contamination is past- this is the most liberating feeling of all. Fried in the same fryer with, cooked in the same water with, baked in the same oven with, flipped with the same spatula as, made in the same facility with- not a concern any longer.

Imagine living in constant fear of "what if"? This is the way food allergy parents live- every second of every day. These are not made up fears, helicopter parents gone wild. These are real life and death daily scenarios which play over and over in the lives of food allergy parents and their kids.

What if by mistake the restaurant cook puts a bun on the burger then after realizing the mistake- takes it off?
What if I didn't read the label correctly and the fries are actually coated with wheat flour instead of rice flour?
What if the teachers don't notice the allergic reaction because each one presents itself differently?
What if a bully at school crumbles some crackers over his food while his head is turned?
What if the label really read: rice, flour, water. Instead if riceflour, water as you originally read?
What if after asking for a clean scooper and a new vat of ice cream- some cone still finds its way into the freshly scooped treat?
What if the line cook boils the gluten free pasta with wheat pasta and no one realizes the mistake until after the meal has begun?
These are the things parents of food allergic children think of each minute, hour and day.

After reaching safety from cross contamination the above fears have been alleviated for Matthew. He still carries emergency medicine- he isn't considered "cured".  This trial is a Phase I- basically an experiment for safety.  The Phase II trial which will begin at Stanford when all funding is in place will test for effectiveness with a keen eye on safety. So far after successfully completing all of his up doses- he maintains a very high daily dose of 16000 milligrams of his allergens- this is equivalent to a daily serving of each rye, barley, oat and wheat.

Since I last wrote the end of April Matthew has been back to Stanford four times. His visits are currently every three months. Each visit tests his blood and skin. For the purpose of this study a person is not considered cured, rather de-sensitized until the skin tests negative. When Matthew began his skin test welts were huge- over 12mm each allergen. Last visit in October the wheat was tiny- about 2mm!!!!!

There have been about six reactions since I wrote last. These reactions have been scary only because we are not doctors and this is still a little new for us. Each reaction occurred because we did not follow the protocol:
NO exercise or physical activity 2 hours before or after the wheat portion of the dose. All of the reactions were similar, involved physical activity and resulted in what the team at Stanford called mild reactions- VERY bright red face, ears, chest- hives, swollen lips. No breathing issues, no vomiting. The only good thing to come from these reactions is Matthew now knows how to give himself an epi-pen- he has done it three times successfully.
According to Dr. Nadeau after approximately 24 months of treatment (taking the oral immunotherapy) these types of reactions should decrease dramatically.

Last weekend our family went for lunch to a local bakery/restaurant Hot Chocolate- a wheat filled paradise. Last year we wouldn't have even stepped inside with Matthew.  Last weekend we all had lunch- the 'kind of' gluten free boy had tomato soup, potato chips, hot chocolate and he tasted one of Mindy Segal's divine hot cinnamon donuts- all this without questioning.  All I kept saying was, "Can you believe we are sitting in and eating at Hot Chocolate with Matthew?  This is a damn miracle."

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skin test oct 2013- the little dot near the W...that's the wheat welt..its small- not gone, but small!


 

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first skin test july 2012- notice how HUGE the W is, that one is wheat!

2 Responses to research meets real life. OIT plus Xolair part 12.

  1. Jimmy J says:

    It is misleading to talk about gluten-free in relation to life-threatening wheat allergy. Anaphylaxis to wheat is not triggered by gluten, it has nothing to do with gluten. Celiac disease damage and symptoms are triggered by gluten. You are adding to the confusion by talking about gluten-free in relation to wheat anaphylaxis.

    • Linda Levinson says:

      Hello jimmy
      Our son is anaphylactic to gluten the protein found in wheat, rye, barley and oats.
      He is not celiac or gluten intolerant.

      Since gluten is present in wheat rye barley and oat- how would you phrase it if a person must avoid?

      Sorry if my writing confused you.

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