Monday, August 26, 2013

How it all began...


How did you find out? That’s often the first question I’m asked when I talk about my son’s food allergy.  The question conjures anxiety just at the thought of dangers that we face daily.  He’s severely allergic to peanuts and tree nuts and mildly allergic to eggs. 

To recall the day when he had his first allergic reaction and to know that it was at my hand, is sometimes difficult and altogether surreal.  Mostly because up until this day I was your typical mother and he was a totally textbook child. 

So here's how it happened: Sitting at the table eating breakfast, I broke a small piece of my toast and fed it to my nine month old son.  Almost instantly he started to scratch at his face.  Around his mouth and his cheeks along with his neck became red and swollen.   I was shocked.  Completely shocked.  What was happening?  Was he choking?  I grabbed him and quickly realized he wasn’t choking but having a reaction to the food I had given him.  I called the doctor’s office.  They instructed me to give him Benedryl and that he should be fine given that he wasn’t having difficulty breathing.  As a new mother, I didn’t have Benedryl on hand.  So in my pajamas and in a frantic state, I drove the drug store and dosed him right there.  We were lucky… incredibly lucky.  The reaction to the maybe 2cm piece of toast was not anaphylactic.  We followed up with an allergist to learn that he was severely allergic to peanuts and tree nuts.  The toast was an oat/nut toast I had been eating for years.  It never occurred to me that my child would be one of those kids I had heard of with these “deadly reactions to every day foods”.  At that moment, our lives changed forever.

Fast forward to today.  My son turned 5 years old yesterday.  We have had some very close calls with accidental ingestion.   Along the way, we have seen five allergists.  All of which have told us that our only option is to avoid these foods.  We are careful but there are accidents.  He’s a child.  It can happen.  And I’m not satisfied with doing nothing. Why did they look at me like I was crazy when I would ask for treatment options?

Not long ago I told my son that I would try my very best to fix his allergies. He cried and laughed at the same time.  It was an incredibly powerful moment for the two of us.  Strangely I had only really considered how much his allergy affected me.  I was the one to read the ingredients.  I was responsible for keeping him safe.  If he had a reaction I blamed myself - I wasn't careful enough... how could I have missed that?   For as long as he can remember, this has been his lifestyle.  But when I saw the emotion coming from him in such a complicated mix of hope, relief and sadness, I knew that I had to do this for him. 

Today marks the sixth day of our Oral Immunotherapy Treatment.  We’re doing great.  Please join me on our journey to peanut desensitization.  We have a long way to go but we’re hopeful and want to reach more people effected by severe food allergies with this amazing breakthrough.
Here's a link to center we are using here in New England: nefoodallergy.org