And the Results Are In . . .

When we spoke with Zane's eosinophilic disorder specialist in New York City back in August she warned us about his food trial process: "It could take years before we find a handful of foods he can eat. It could take two to three years -- we don't know," she said.

Here is what she didn't say: That if and when they do discover eosinophils, it is emotionally devastating to say the least. Zane went to Switzerland for his first endoscopy after conducting a food trial (it's his third endoscopy total) and the results from his optomistic Swiss doctor are in:

I understand that your are curious to hear about the results as quick as possible. . . . Concerning the biopsy (short report): Dr. XXX describes a wide variability in the number of eosinophils : distal oesophagus: max 61 eos per HPF, proximal oesophagus maximal 73 eos per HPF. The pathologist classifies the findings (in comparison to the written report from previous biospies) as eosinophilic oesophagitis with "mild" activity and therefore a clear improvement of the findings.
As soon as we have reveived all the results, we will do a final report with our proposal for the further treatment.

For those of you not familiar with eosinophilic disorder jargon, it basically means that Zane is highly allergic to corn. His numbers were still high. Prior to conducting the food trial on corn, Zane's eosinophil count was more than 100 in his upper esophagus and 63 in his lower esophagus. His numbers did drop a bit leading the Swiss doctor above to conclude that he has "improved." But, from a mother's perspective, we still don't have a food to feed Zane and he loves his corn. Now, how do I tell my son that this is yet another food that he can not eat?

Here is my other dilemma: The doctors in New York believe that Zane is not allergic to grapes and possibly not allergic to pork. You really can't do much with grapes but here in the United Arab Emirates, it is national law that you can not send your child to school with pork products. So, if I do a food trial with pork while Zane still doesn't have a food that he is not allergic to yet then I have nothing that I can send him to school with. I have considered approaching the Ministry of Health and Education on the subject but I am afraid to because it wasn't easy finding a school for him to attend to begin with. Some schools didn't want a child to attend with severe allergies and he was rejected on that basis. While that is illegal to do in most of Europe and the States - here it is acceptable practice and considered a 'non-issue.' And I am afraid to turn my son into a poster child for this particular genetic disorder because it scares people off frankly. I want him to have as normal a life as possible that he can given whatever limitations that this disease presents him with. But, that is the thing -- I don't want him to percieve any of this as a limitation.

We will wait for his doctor in New York to return from her holiday and then discuss the findings with her. By the way, at Mount Sinai Hospital in New York City they treat 400 and some patients with eosinophilic disorders. Of those, only two are allergic to corn after conducting a food trial - Zane is now one of those two.

Since our food trial began though we were optomistic because Zane's weight gain improved dramatically. He managed to gain three kilos (approximately just over 6 pounds) and now wears age appropriate clothing. He was vomiting significantly less and is still the same extremely active, overly gregarious two year old you have ever met. He is the life of the party at his drumming class and is usually the first one up and dancing to the beat of the drums. He still loves painting and puzzle making and for the most part has resigned himself to not eating food. Occassionally, he does ask for it and giving him his Elecare is a constant challenge but he is a good kid with an amazing heart. Although, I do have my emotional days when battling this disease, this is the set of cards we have been dealt and I want to be able to say that I played a mean hand and taught my son well. I hope he will continue to be positive and just be himself. The rest will fall into place when it is meant to be.

I should also mention, that Zane is now a proud big brother. Selma was born on October 19, 2008 at 12:34 pm in Dubai at the American Hospital. It was a short and relatively easy delivery and she is now home safe and sound. Zane loves holding her and pointing out all her tiny little features that make all new babies so cute.(originally posted on October 29, 2008)