Thursday, May 23, 2013

Thursday's Balancing Act!

This week is National Eosinophilic Awareness Week. All three of the Throne boys have EoE. Our journey began in 2009. That was when our oldest was finally diagnosed correctly with EoE. Over the next two years our other two children would be diagnosed with EoE. Each one of our boys have very different symptoms. Our oldest presented with anaphylaxis to foods. Our middle son presented with odd throat clearing issues. Our youngest was an extremely picky eater and still doesn't like to eat. He will only drink water and has a very limited diet.

EoE is genetic. My boys were born with it. I actually had a mom ask if it was contagious when her son was playing with my oldest. No, it's not contagious. My boys were born with EoE and had symptoms begin shortly after they were born. For example, failure to thrive, diarrhea, and vomiting.

Each one of our boys is on a different treatment of diet elimination and swallowed steroids. We're trying to manage symptoms and keep as many foods in their diet as we can. My oldest is having trouble right now. He's failed both steroids, but they are trying the first one, Flovent, one more time at the highest dose possible.

We have already decide as a family that we won't go any higher on steroids. The hospital has told us that they do not go any higher on steroids. That leaves us two options, diet elimination or removing all food from his diet and putting him on a medical nutritional formula. Once his EoE is in check, we can reintroduce food one at a time. He would have an upper endoscopy to see if he's passed that food. My oldest has a very restricted diet as it is due to anaphylactic issues with multiple foods. This summer we will have to make some tough treatment choices. He also sees genetics in the fall to be screened for connective tissue problems. They are finding a correlation between Eosinophilic disorder and connective tissue diseases.

I'm sharing my family's story to bring awareness to Eosinophilic disorders. The Throne boys are amazing little guys. They will never have perfect attendance at school due to hospital days. They are fighters. I'm so proud to be their mom and to walk this path with them. There is no FDA approved treatment option for them. I'm hopeful that one day there will be a treatment option that frees all those who suffer from Eosinophilic disorders.



Jennifer Denys said...

If I hadn't already known about their health issues when I visited you last Autumn I would not have guessed - until you brought out the multiple of medicines at the end of the day. It is a credit to you and Mr Throne that you raise them to be normal boys (as much as you can).

Tatum Throne said...

My boys look so normal on the outside. You wouldn't know by looking at them that they have a chronic illness. I'm so glad you came to visit us! :o)

Sally Klingaman said...

You and your family are always in my thoughts and prayers. Hugs every day for all of you.

Tatum Throne said...

Thanks Sally! :)

Tatum Throne said...

Thanks Sally! :)