So this week has been very informative. The Cincinnati Children’s Hospital does a really good job at making sure that the families that come here are taken care of. There are nurses, doctors, social workers, teachers, dieticians and a slew of other people waiting to talk to you about your son and your medical history.
Most of you know what Austin has but for those of you don’t or aren’t sure, he has a disease called eosinophilic esophagitis (EE). Eosinophils are a type of white blood cells. They are common in things like parasitic infections, allergy, connective tissue disease and tumors. They are not typically present in the esophagus. Well of course that is where my son happens to have them, in the spot that they aren’t typically found. These eosinophils will cause a hardening and constricting of the esophagitis.
Endoscopes are used to diagnosis EE. During the endoscopes they collect tissue and biopsy them to count the amount of eosinophils. Generally anything over or between a range of 15 to 25 eosinophils will constitute a diagnosis of EE. Austin has had 5 biopsies since he was originally diagnosed in 2008. They bounced between 10 to 40 to none eosinophils in his esophagitis.
We have used a plethora of things to try to reduce the amounts of eosinophils. Elimination of foods that he is allergic to, removal of foods that he isn’t allergic to but have proven to be effective in reducing EE, acid reducers and steroids.
On Monday we started our little ride here at the Cincinnati Children’s Hospital. We meet with a gastro doctor. He explained what would happen for the rest of the week. Austin had:
Upper GI to get the biopsies
DXA scan to look at bone density
Allergy testing (scratch and patch)
So far we have received the results of the DXA scan and the upper GI.
The biopsies didn’t come back with the numbers that we thought that we would see. His eosinophils were 229 in the middle of his esophagus and 104 in his lower esophagus (if you haven’t figured it out, those aren’t good numbers). His DXA scan showed that he was in the -2% for bone mass density for his age. The chart looks much like growth charts.
Eosinophilic esophagitis is a chronic disorder. He won’t grow out of it. It won’t spread. He has EE and that is all it is. It runs in families and it affects men 3 to 1. That is all I know and that is all I know about what has happened this week. We have spoken to doctors and they have given us some options for treatment. We need to talk to the allergist and the dietician tomorrow before we have a full enough picture to make a decision.
We will let everyone know when we know. In order for the treatment that we pick to be effective everyone will need to be aware and actively participating.
