Our Current Treatments for Eosinophilic Esophagitis

I thought I should share how we are currently treating my son's case of Eosinophilic Esophagitis. I know there is no set treatment and most of it is still experimental. There is currently no known cure for this condition.

Before he was diagnosed with EE, he was on Zantac, a medicine usually given to people with reflux. It didn't improve his daily vomitting at all.

In September 2006 when he was finally diagnosed they said to continue the Zantac to help his stomach, but also put him on Qvar, a steroid inhaler. He was to swallow this medicine, not inhale it like it's usually taken. The steroid is supposed to reduce any swelling in the tissues of the esophagus caused by the eosinophils.

When we switched insurance we had to find new doctors. They then changed his stomach medicine to Cimetidine which also has a histamine blocker. He was also switched from Qvar to Flovent, the more commonly used steroid to treat EE. Again, he has to swallow this, not inhale it.

All these medicines didn't seem to do a single thing though. The one thing that made a HUGE improvement in his health was eliminating a long list of foods. On October 17, 2006 he had scratch testing done for the most common foods. He tested positive to many of them. That very day we eliminated the following from his diet: eggs, chicken (all poultry), wheat, corn, soy, peanuts, tree nuts, and peas. He didn't throw up again since that day. That's why that date sticks in my mind so strongly. My money is on the food eliminations at the winning "treatment", if you can call it that. It's more about avoiding than treating, and not fun, but it's working for now. We're grateful that he is no longer getting sick several times a day.

He continues to take Cimetidine twice a day. He is also down to taking the Flovent only once a day. Interesting to note, he had a strong reaction to a cold virus in the spring of 2007 that caused incredibly large hives on his body and a few bouts of vomitting, but nothing like in the past. Once the cold passed, everything cleared up and we reduced his Flovent again back to once a day. He is also taking Zyrtec every day and is on an iron supplement.

We continue the meds and the restrictive diet. The diet has changed a bit. We're now also eliminating milk and barley. BUT, we have been able to add back wheat! I'm crossing my fingers that we can eventually eliminate the medicines since in my opinion, I can't see that they're making any improvement. And I also hope that he outgrows the need to eliminate some of the foods currently on his "do not eat" list.

I consider us lucky. Even though we're on meds daily and have a very long list of things he can't eat, we try to stay positive and talk about all the things he CAN eat. I know there are many children with this condition who can't eat a single thing. I simply can't imagine how challenging that must be. My son is strong and he is dealing well with the food elimination in my opinion. And if you looked at him, you wouldn't know he has any kind of health problems. He is a very handsome, smart and charming young man. I love him dearly!