You Said WHAT?!

1 Apr

We have been on the EoE (Eosiniphillic Esophagitis) road since 2008.  It is very hard to believe that we have known about this disease’s existence for that long.  It really does seem like we only learned about it last year when Button Boy had to begin the elimination diet to attempt to control the effects of EoE.

It has been one year today since we took most food out of Button Boy’s diet. On April 1, 2010, we began eliminating Soy, Nuts, Egg, Wheat, Dairy, Fish and Cinnamon.  The fish and cinnamon were the only two high allergen foods that he reacted to, and the reaction wasn’t even on the “prick” test — it was on the patch test.  Anyway, we began eliminating food last year.

Skip to March 21, 2011. Button Boy has his third endoscope at Cincinnati Children’s Hospital performed by Dr. James Franciosi (who I believe is a little scared of how close my family is!).  The initial pictures taken during the procedure looked promising.  They, however, did not look as clear as they did in December 2010; therefore, Dr. Franciosi was guarded in his plan for Button Boy.  My mom did “put up her dooks” to threaten Dr. Franciosi with bodily harm if he didn’t add Wheat back to my baby boy’s diet!!!  The look on Dr. Franciosi’s face was PRICELESS!!!  Like I said — scared of how close my family is!  Dr. Franciosi’s recommendation was to go ahead and add back Wheat and to remain on the same *lower* dosage of Flovent until we got the results from the biopsies.

Monday we got the call.  The call about the biopsies.  I had prepared myself for what we considered the worst — the eosiniphills were back and elevated above 24 — and Button Boy would have to go back on the higher dose of FloVent, which would lead me to probably have a nervous breakdown in the next month or so, because he had some side effects from the higher dose that he didn’t have with the lower dose.  The call did not end that way, though!

He has ZERO EOSINIPHILLS AGAIN!!!!  I almost cried!!!!  The lower dose is working, but there is some thickening in his esophagus with some furrowing.  Dr. Franciosi is not as concerned with it and we are still adding Wheat back to Button Boy’s diet.

We have transferred our file back to Children’s Hospital Birmingham since we are finished with the clinical trial and are controlling the EoE with the FloVent.  Button Boy will have to have another endoscope in Birmingham this summer to see how adding back Wheat effects the EoE….but, HEY!  it isn’t driving to Cincinnati!

Y’all make sure and do the HAPPY DANCE with us!  and send us any recipes that include wheat without Eggs, Nuts, Fish, and Cinnamon!!!!  The next high allergen food we will add back will be eggs, that way Button Boy can enjoy some Krispy Kreme Doughnuts again!!!!

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2 Responses to “You Said WHAT?!”

  1. Vicki April 1, 2011 at 9:48 pm #

    Yay! I’m so happy for y’all!

    • EmmyJMommy April 2, 2011 at 8:12 pm #

      Thanks Vicki!! We have had wheat at every meal this week!

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