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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Saturday, January 7, 2012

Eosinophilic Esophagistis. English Translation Please!?!

Eosinophils, a type of white blood cell, are an important part of the immune system, helping us fight off certain types of infections, such as parasites. -www.apfed.org

Eosinphilic Esophagitus is a disease where these eosinophils collect in the esophagus. There are other eosinophilic disorders where they collect in other parts of the body.

From what I understand, John's body treats food as an infection or a parasite and attacks it. If left untreated these Eosinophils can cause extensive damage to the esophagus.
Treatment for EoE consists of a few different methods. One being an elimination diet, by removing the top 8 allergens. They are dairy, soy, wheat, seafood, peanuts, tree nuts, shell fish, eggs, and beef. The second step if there are still symptoms is an elemental diet. This approach requires an amino-acid based formula in place of food. If there are still symptoms on a solely elemental diet then come the steroids. 
A lot of kids with EoE end up with feeding tubes due to damage done by the eosinphils, oral aversions, or for whatever reason they are just not getting enough nutrition from drinking the formula alone.
As of now there is no known cure for EoE.

We started out with the elimination diet with John. It was pretty easy considering his diet consisted of Soy formula, because we already knew he couldnt tolerate milk, rice cereal, oatmeal, and 9 of the 1st and 2nd stage baby foods (carrots, peas, green beans, sweet potatoes, apples, pears, bananas, peaches, and prunes). We switched him to the Amino-Acid based formula, took out the rice cereal which we were using to thicken his bottles to try to help it stay down, took out the oatmeal, but kept him on all the baby foods.
So far we are that sure that John is allergic to milk, soy, wheat, and rice. 
Around Christmas we decided to eliminate all the baby foods as well because he was still having symptoms but we were unable to pinpoint which of the 9 foods were causing a reaction.
John also has developed an oral aversion. He can not eat anything that is not smooth in consistency. I discovered this around 8 months. Every time we tried to introduce a stage 3 food he would gag and throw it up.
Even after two weeks of a solely elemental diet we are still seeing John gag, cough and spit up. 
Our goal is 24oz of formula a day. Right now John is averaging 20. He has come a long way. In November when we started this elemental diet he was averaging 13oz, he bumped up to 18 when we cut out baby foods and is now up to 20. We started a steroid today so we should see some more improvement over the coming weeks.
His smile lights up my life. He is so happy and that means so much because so many kids are in constant pain and can't even get a good nights sleep. Our boy really is remarkable.

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