Friday, December 5, 2014

Peanut Allergy Treatment - Day Zero

[This was originally posted 12/1/2014 elsewhere, but I'm going to dedicate this blog to this peanut story for the benefit of those who are really only interested in this topic.  Hence, the inconsistent timeline with the posts.

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I say day zero, because while we went to the clinic today, we didn't actually start the treatment.  Today was an education day to prepare for the rare opportunity we are about to experience in treating our daughter for her allergy.  

I guess I should say here that my daughter is severely allergic to peanuts.  

It terrifies me.  

Having a child who is 14 years old, you'd expect that she can (in theory) understand their medical conditions, and begin to grasp an assessment of risk and consequences in their lives.  The problem is that my daughter is not 14.  She's three.  I mean, for goodness sake, she's still potty training.  She loves trains and the garbage truck.  She likes to color pictures with markers.  She thinks that every meal should involve chicken nuggets (Okay, so do I, but I can at least practice some self-restraint for both of us at least on that front).  Oh, she can parrot to us very well that she can't have any peanuts because they will "Make [her] sick."  But put a peanut butter cookies down in front of her, and she'll have no idea that this cookie could send a reaction through her little body that could swell her throat shut as she is gasping for air and end up killing her after the terror of it all. 

Oh yeah, apologies for the stark description - but that's the fear I have for her every time we drop her off at someone's house to babysit.  That's the fear I have when I see some neighborhood toddler at the park suddenly hand her some of his snacks to eat.  And as she's grown up to all of the maturity inherent in a 3 year old, and begins to play with friends more, I'm realizing that tomorrow she'll be starting kindergarten, and the next day will be Halloween at school, and Christmas parties, as well as Valentines day treat exchanges, and friend parties and, oh yeah, sitting at the lunch room table.  

Each one of those is a game of Russian roulette.  Eventually, luck will run out.

We've been to an allergist.  She's done the back scratch test.  She's done lab work.  Without getting into the details, we've been told in no uncertain terms that she is to absolutely stay away from peanuts.  No peanuts in the house.  No peanuts anywhere around her wherever she is.  Epi-pen on her at all times.  Or, as our previous allergist's clinical note says in the last item under "Plan":


My sister +Christa Dastrup was watching the news a while ago and saw a news story on an allergist here in Utah who is doing something different with his patients. She sent me a link to the news story.

...Incredible...

He is TREATING patients for their allergy.  He is having great success at taking kids who have been severely or anaphylactically allergic to foods, and giving them the very thing they are allergic to (in small, controlled, but increasing doses under close supervision) in order to desensitize them to it, and remove the danger.  There are kids who previously have been emergently hospitalized and unable to breathe due to peanuts, who are now eating them by the handful without a problem.  


Today, Monday, I met Dr. Douglas Jones, of the Rocky Mountain Allergy clinic in Layton, Utah.  I feel incredibly lucky to have this clinic close by (about a 1 hour drive away for us).  There have been people who have moved here from Hawaii and Australia to get the opportunity to do this treatment. He's the only one in the Rocky Mountain West who is doing this -- who has made the effort to plan, design, and make this treatment happen.  And he's already having incredible success rates even in the relatively short time he's been doing it. 

The actual treatment will start on Thursday.  

I am absolutely thrilled that we have this chance to do this!

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