My son Jack was born with a unique chromosomal disorder, 5q11.2-q13.2 deletion, or Winnlemans Syndrome as we call it. Winnlemans Syndrome (a made up name... because he's our "Winnle Man") results in severe cognitive impairment, small stature, slightly wide set eyes and a flattened nasal bridge, and a super adorable personality. *(UPDATE: We've found out about 4 other children world wide with similar deletions, similar facial features, developmental and motor delay, and ocular anomalies and it has been suggested by the reporting geneticist that it be called 5q12.1 Deletion Syndrome or Jaillard Syndrome, but that is so far unofficial, so Winnlemans it is!). But seperate from the issues his disorder has caused him, he also suffers from a condition called Eosinophilic Esophagitis (EoE), an allergic reaction that occurs in the esophagus and makes eating very painful unless all of the allergic foods are removed from the diet. The trouble with EoE is that the suffer can literally be allergic to anything, and since the reaction occurs only in the esophagus, skin testing and blood testing are not always accurate. The only real way to know for sure is to remove all food from the diet except an elemental formula (which tastes terrible) for 6 weeks, then to introduce foods one at a time, with endoscopies and biopsies in between new foods to test for the presence of eosinophils. Sounds tiring, doesn't it?
But before going to that drastic of a route, Jack's GI suggested we remove all of the foods he has tested positive to, and so that's what we've done. Those foods are:
- Mammal meats
This blog is where I intend to document our progress and some hopefully useful recipes along the way :)