Button Boy has been on a Clinical Trial for Eosiniphillic Esophagitis since our initial visit to Cincinnati Children’s Hospital in late August/early September of 2010. The Trial is a double blind trial. He got a confirmed diagnosis after his EGD and Impedence Probe…and was allowed into the study at that time. He was given unmarked inhalers of Flovent (or placebo, we didn’t know until the second part of the trial) and asked to take 4 puffs (instead of inhaling them into his lungs, he swallowed the medication so it would coat his esophagus) in the morning and 4 puffs at night. We desperately hoped that he was actually on the Flovent because after about a month of medication he began having the typical symptoms (for him) of being on a steriod.
We returned to Children’s in Cincinnati in December 2010 for his 3 month EGD. When he had his EGD in August, one of the biopsies was counted to have over 235 eosiniphil cells (the cut off for the diagnosis of EoE <Eosiniphillic Esophagitis> is 24 eosiniphil cells)….the tech who read his biopsy was amazed!!! This biopsy taken in December had 0 eosiniphil cells!!!! ZERO, ZIP, ZILCH, NADA!!!!! We were amazed and thrilled!!!! Unfortunately, Button Boy has still been on a retricted diet (no Wheat, Eggs, Nuts, Fish or Cinnamon) but has gone down to 2 puffs in the morning and 2 puffs at night! YIPEE!
His symptoms have decreased and seem to be, most of the time, non-existant!
We did find out that the first 3 months of the trial he was on the real Flovent. We also knew that no matter what he was on during the first three months of the trial that the second three months he would definitely be on Flovent.
So, we are getting ready to return for his 3rd EGD as it is related to the trial. We are very hopeful that his biopsies come back at zero again.
Once again we are looking forward to seeing Dr. Shazad Saeed, he has been Button Boy’s doctor since he was 5 months old. It is always so sweet to see such a familiar face in Cincinnati!!! Mojo has taken a new picture of Button Boy to give to his doctors…it is one of the highlights of our time with our doctors to share a part of our family with them.