The Importance Of Food

I haven’t been posting much to the mommy blog lately because we’ve all been so busy around here. We’re all kind of exhausted and trying to find some reserve to make it through the next couple of months. You see, it all started a few months ago when Ewan couldn’t drink without coughing and sputtering after almost every drink. We all kind of thought, ‘Hey man, did you forget how to drink or what?’ Finally, he did at speech and his very wonderful SLP, Stacey, was like, ‘Uhh, how long has that been going on?’ So after some discussion with her, with Ewan’s pediatrician, and with the Feeding Team and GI specialist, we decided to start investigating into the problem. At first, we just made him drink slowly, and reminded him to take small sips. Then since the swallowing problem didn’t go away, Ewan’s pediatrician thought it might be time to do a test called a Modified Barium Swallow. He did do the coughing and sputtering during the test, but really nothing out of the ordinary showed up. So, we all kind of tackled the problem from a behavioral aspect, thinking maybe this is some kind of stim—it wouldn’t be unheard of. But then, things slowly started to get worse and worse and finally Ewan was choking on some foods and looked like he was in pain when he would eat. This was when the Feeding Team thought it would be time to consult with Ewan’s GI specialist because it just didn’t seem right. They were intuitive enough to take those Autism blinders off and look at Ewan as a whole child, not just an autistic child, and tackle the problem from there. Thank the Lord they did.

Really long story short, it turns out that Ewan also has something called Eosinophilic Esophagitis. I’m still trying to get a handle on what that big and hard to spell term (let alone say) means, but basically I’m learning that it is a type of autoimmune disorder that affects the esophagus and basically starts to damage the esophagus itself. This is what was causing Ewan not to be able to swallow well, and was causing all the pain. We are getting a crash course in the disorder and the possible treatment plans this week and we’re gearing up for a major change in our lives.

Feeding Ewan has always been difficult. Nursing him was hard, getting him to eat solids was hard, and then getting him to eat a normal diet has been hard and still is. One of the most important things I’ve learned from Ewan’s Feeding Team is that there is no one dimension to any problem, especially feeding aversions and disorders. So while we have worked with Ewan over the past year to expand his food repertoire based of his limited diet and we’ve worked on it from looking through our ‘autism glasses’ we now have to view the world of food and eating through some ‘EE” glasses. In reality, we’re probably looking at the world of food and eating through a wide angle lens that looks at behavioral issues, sensory issues, GI issues, and a whole host of other things I probably haven’t even thought of yet. So while we’ve spent the last year working on teaching Ewan about food and that it is fun, good to eat, and makes you healthy we now have some backtracking to do and we’ll have to teach Ewan that SOME foods (in his case) are fun, good to eat, and make you healthy—the rest of them may be off limits for him.

We hope that the treatment for Ewan in the next weeks and months help him to realize that eating should not be painful and that all food doesn’t cause pain. Reintroducing Ewan to the world of food in a few months may be quite different. We realize the sensory aspect will still be there, the routine and food jags will still be a part of his life, but we can only hope that at the very least, eating might even be enjoyable for him. I cannot say enough about the people that work with Ewan at St. Johns, at Children’s Memorial, and at Sarah Bush Lincoln Health Center and Carle Hospital for helping us understand the problem and for taking off the autism blinders that many often put on when treating an autistic patient, and for continuing to treat Ewan as they would any patient and to keep investigating, to keep searching when answers don’t always present themselves. So while our next few months may be hard and an uphill battle, at the end of the day, I know that I have the most caring and compassionate medical staff working for my son and our family and I can find peace in that.

For anyone looking for more information about Eosinophilic Esophagitis please consult the very amazing website APFED, which stands for American Partnership for Eosinophilic Disorders. For more information about the Feeding Team at St. Johns please read our Feeding Team interview about feeding disorders and Food Chaining (trademarked) with Sibyl Cox, R.D., Cheri Fraker, SLP, and Laura Walbert, SLP.

November.12.2006. - Mommy Blog