BLOG: Peanuts for my Princess; by Nicole, Ava and Ethan

imageThere are over 50 OIT family blogs published in our Research & Learn library. They contain the journey of that family in OIT–some are in clinical trials, and others are in private practice with board-certified allergists. All the blogs are fascinating to read, full of wisdom and knowledge unique to that family’s journey.

OIT has it’s own “language” and one of the most dreaded and beloved is “Day 1”.  It’s a day where you start with minute amounts of allergen and build up to the “take-home” dose you will be on for 14 doses before your next office “updose”.  There is a goal dose, but not everyone gets that far. Day 1 is a transition, from being powerless to becoming empowered. Taking charge and taming the fear. For most, the actual Day 1 is kind of boring. We bring lots to do to occupy ourselves. In this story, Dr. Mayer and his staff are professionals: they have seen many Day 1’s. But they still take the time and care to walk nervous families through the steps.


Wednesday, August 5, 2015

Day 1

We made it.  Day 1 behind us.  And you know what?  It was pretty painless.  All those months of research, and that scary first phone call to the doctor (because there are many), and “lurking” on OIT facebook pages, and wondering, “can we really do this?”  Yes, you can.  Believe me, I know we have a long road ahead of us, but to get to this point in the game is huge for us.  The weight lifted off of my shoulders right now is, as my daughter likes to say, “ginormous”!

The first dose was big.  Then I relaxed a little for the next few doses.  By the time we were ready to start the afternoon doses, I became nervous again.  This is where the reactions occur.  What reactions?  Will she throw up?  Will she have hives?  Will she start coughing?  Will she get a tickle in her throat?  For the love of God, will we have to epi?  (This is rare during Day 1 and during the process.) Dose after dose would come and go.  “How do you feel Ava?”  Good!  She would say.  During this time, the amazing staff came in and walked us through every. Last. Detail. of the process.  The nurse came in and had my husband and I role play having to Epi.  With both an Epi pen and an Auvi-Q.  With the training injectors and an ACTUAL injector (into a towel!).  We left with a comprehensive Food Allergy Action Plan to share with her caregivers. Not just, “Watch for symptoms and you’ll know when to Epi.”  She and the doctor answered every single question (because there were a million) that we – OK, I – had.

Even though Ava went through the entire day without a hitch, this process, this face-to-face, this meeting other OIT parents and kids, was cathartic in and of itself.  And now I feel prepared.  Prepared and ready for anything that comes our way.  And confirmation that we absolutely made the right choice. Even if she had had a reaction, we were in the right place. And we had a place to go for answers any time of day or night.

For me, NOT trying this was not an option. Even if we do happen to come across obstacles that cannot be overcome (also rare), we would still be no worse off than before we began. But if we are successful? Well, the benefits are priceless.

So home we went with our little styrofoam cooler of fruit punch flavored peanut solution, relief and hope for a better tomorrow.

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