Okay, so the issue Robert has been dealing with for what
seems like forever, is not caused by Huntington’s Disease. That should be a
good thing. Only, it really isn’t. In his own words “As if I didn’t have enough
to deal with because of Huntington’s Disease…”
He has what is called Eosinophilic Esophagitis. Short story
version is that it is an allergic inflammatory condition of the esophagus where
the white blood cells attack the food while it is still in his throat and
create a sticky substance within his throat. Then, because it is sticky, more
food sticks to it and creates more issues swallowing.
This is a concern for us because of the situation with his
mother. The esophageal sphincter (the small flap that covers the windpipe when
eating or drinking) stopped functioning properly. This is not uncommon for a
person with Huntington’s Disease. This is why most of them wind up on a feeding
tube towards then end stages of the disease.
So, if Robert has an issue with food getting stuck in his
throat and his sphincter stops working, that just adds a whole other set of
problems we did not anticipate dealing with.
What does all of this mean?
Well, we aren’t sure yet. The inflammation is most likely caused
by allergic reactions to food of some kind. In other words, food is making him
sick. It can be treated any number of ways. The first step is for him to
take an acid inhibitor (read Prilosec or other acid-reflux medication) and see
if that helps. That is where we are at today. Let’s pray that works! He
goes back to the doctor in 6 weeks or so to have another endoscopy done to see
the results.
If there is no improvement, the next step is food allergy
testing to determine what foods are causing the issue. The most common
allergies are dairy, wheat and beef. Once they are determined, the food is eliminated
from the diet and see if the condition improves.
After that, if he still has issues, he will then have to
have a procedure where they insert a tube down his throat that will stretch the
esophagus and thus make it larger and allow food to pass through.
Obviously, we hope and pray that the first phase of
treatment is all he needs. We will know for sure in about six weeks.
