It's Not the Huntington's Disease

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.