Sunday, May 15, 2011

Eosinophilic Esophagitis

Last week was Food Allergy Awareness Week, this week is National Eosinophil Awareness Week.  Whether we're parents of food allergic children or have a severe food allergy ourselves, we understand the trials of diligently avoiding offending food(s).  What if though, all foods were offending?

I have a very dear friend whose 9 year old son has Eosinophilic Esophagitis (EoE).  He went from a child that could eat everything to a young boy that could eat nothing.  Earlier last year, his only food source was a special elemental formula juice box.  After numerous endoscopies with biopsies, he has since been able to add foods to his diet.  Know what he can eat now?  Grapefruit, lite canned peaches, sweet potatoes and pinto beans.  The only seasoning allowed is salt and sugar.  His only drinks are water and the elemental formula juice boxes. 

What is EoE?  It's a disease characterized by inflammation of the esophagus with an abnormal number of eosinophils (a type of white blood cell associated with allergies, parasites and cancers). In my friend's son’s case, the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case.  Her son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day and vomiting after eating. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.

I know what a battle it is to keep Abigail safe from the risks of her peanut allergy.  I understand what means my friend goes through to keep her son safe, and I see how incredibly brave her son is as he watches his friends enjoy what used to be his favorite foods.  I don't pretend though to understand what their family must go through on a daily basis.  We can still go out to eat.  Abigail can still have a birthday cake not a cardboard box decorated like a cake so that there are candles to blow out. I can still fix our family's favorite foods.  We're not spending the equivalent of a mortgage payment each month on elemental juice boxes because insurance doesn't cover them.  We can rely on organizations like FAAN to help fund food allergy research and serve as our voice for new legislation.  Abigail has blood drawn and skin prick tests performed every 6 months.  She's not put to sleep for an endoscopy every 2 to 3 months.  No, I don't pretend to understand.

What I can do is help my friend raise awareness and be there for her when she needs emotional support.  I love her dearly.  I've been leaning on her for support in dealing with Abigail's allergy for years, and I can't thank her enough for that.  She's a blessing in my life.  She and her family deserve a few blessings themselves.

If you'd like to read more about EoE or find out more about National Eosinophil Awareness Week, my friend has a blog, www.eeldkids.blogspot.com.

6 comments:

mom with SPECIAL [needs] kids said...

All I can say is that I love you, and I am very blessed to have you in my life. Thank you for caring so much as to help spread awareness about EoE. I think you do know how much it means to me.
Love you!
Ginny

Mom with a Mission said...

Love you too! Good luck this week! I will be wearing hot pink tomorrow, and the kids will love being able to eat a Dum Dum sucker in Andrew's honor on Tuesday. I need a bracelet.

To my readers...wonder what in the world I'm talking about? Read my friend's blog. These are just a few ways I can show support during National Eosinophil Awareness Week.

Lisa said...

I have learned about EE this year as well as we have ventured into food allergy land. I hope that they start to research it even more and continue to work on treatments for all our allergic kids!
Sending up my prayers for all the EE folks out there!

Julie said...

She is blessed to have such a wonderful friend! Thank you for sharing.

Laura said...

thanks for sharing, I've started reading about this lately as well. hugs to all those little children dealing with this!

Mom with a Mission said...

Lisa, Julie, Laura - thanks so much for posting a comment. I'm so appreciative of you guys!