I wrote the following post about EE a couple of years ago, just to give a basic synopsis of my son's condition:
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American Partnership for Eosinophilic Disorders (APFED) is the organization for people with EGIDs (eosinophilic gastrointestinal disorders). Check out their website for more info. Below are some highlights, taken directly from the website [my added thoughts are in italics].
What is an Eosinophil?
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.
What is EE?
Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.... Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines.... In certain families, there may be an inherited (genetic) tendency. In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve. [Basically, when L eats a food he's allergic to, eosinophils attack the food and his esophagus, causing inflammation and bleeding. This is how he became anemic at 6 months old, from the prolonged, microscopic blood loss caused by this attack on his esophagus.]
Elemental diets, in which all sources of protein are removed from the diet, are another dietary therapy. An elemental diet includes only an amino acid formula (building blocks of protein), with no whole or partial proteins. Simple sugars, salt and oils are permitted on an elemental diet. Because these formulas are not palatable, the use of a strict elemental diet may require a feeding tube. Amino-acid based formulas are very expensive and are only sometimes covered by health insurance. Elemental diets are effective in treating most people with EE. [L is a rare case in that he can drink the formula without a tube, possibly because he was introduced to the nasty flavor at such a young age, 8 months old.] Check out apfed.org for more info.
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UPDATE
As of March, 2011, Leo drinks 28 ounces of Neocate Jr. per day, by bottle. He eats 3 meals a day (plus snacks) of regular food, avoiding wheat, corn, peaches, pineapple and nuts. This is huge progress. Only a few months ago he drank 42 ounces of formula; and until last year was avoiding an enormous list of foods, including soy, oats, and chicken, which he can now enjoy. And we are so blessed that he is HUGE: 75th percentile in weight, 95th in height. Praise the Lord!
