
http://apfed.org/
Apfed is a nationaly recognized supporter of kids and parents that suffer from eosinophilis diseases, like my 8yr old son Jake. They are trying to raise awarenss of this dibilitating disease that strikes thousands of children and adults each year. Many doctors don't even know what EE, EG or EGID is. Raising awareness not only will help others understand this disease, but also raise money to try to find a cure.
My 8yr old experienced terrible GI pain back in the fall of 2007. We visited the Pediatrician, the Allergist and the GI. After an Upper Endoscopy, we was diagnosed with EE, Eosinophilic Esophagitis. He under went allergy testing to over 40 foods, most of which came back positive. By Feb of 2008, he was losing weight and in terrible pain (missing huge amounts of school), so he was admited to Children's Hospital (who actually has one of the top EE programs in the country) and a feeding tube was put in his nose. After 8 weeks of a formula only diet, called Neocate Jr(a hypo-allergenic formula, runs us $40 a day to feed our son), he improved, greatly. He was scoped again and his Eosinophil level was zero. By being on a formula only diet, his EE went into remission. In May of 2008 he underwent surgery to place a permanent feeding tube, called a G-tube, into the wall of his abdomen. It's been over a year and he still has his feeding tube. I've shared this story with many, Jake doesn't let that slow him down. He attends 2nd grade at Meridian Elementary, takes his feeding pump to school each day. Last fall he was able to play flag football, and will sign up with BYFA for tackle this fall. He's rock-wall climbed, swims, ran the Cherry Creek Sneak, and joined his schools DI(Destination Imagination) team. He is a great kid who can't eat. But you'd never know!! In the last few months, he's undergone some food trials at home. Out of the 9 foods trialed, he's been able to pass 3! Turkey, apple and bananas! He still does his formula feeds (approx 720mls a day), but now has a few things he can munch on and enjoy (especially at school where food is so focused).
We just wanted to share our story, and please check out the Apfed link above for more info.
Thanks so much!
http://apfed.org/
www.eoscolorado.org