Friday, November 20, 2009
Monday, November 9, 2009
Last week we traveled with Aaron to Cincinnatti to their Center for Eosinophilic Disease. He continues to struggle with gaining weight, now has fallen to less than 3rd percentile. Our terrific allergist recommended we go there, as they have been at the forefront of research and treatment for this disorder. I learned a lot there and am reading a lot of the research articles now. The research really dates back only about 10 years, which makes it hard to really know what Aaron's future holds. It used to be these kids were thought to have really bad GERD that just didn't respond to treatment. They drill into your head that it is a chronic disease, but I hold onto hope that there is still a lot they don't know. The treatments include elimination diets where they eliminate what the patient is allergic to on skin tests or eliminate the 6 most likely allergens, swallowed steroids, and elemental diets where kids are fed completely by formula for a period of time and then foods are slowly added back. The CCED recommends diet restrictions in lieu of steroids for kids his age, because the long-term effects of swallowed steroids are unknown. (These steroids, often used for asthma, are poorly absorbed, so we hope they are just coating the esophagus and thus more safe) So....Aaron did fine on his endoscopy (the only way to tell how his esophageal disease is to put him under general anesthesia and biopsy with a scope, ugh). His esophagus looks normal now (YAY, before it had signs of EE) and his biopsy showed only 4 eosinophils per HPF (previously more than 100). So...the doctors presume his failure to gain weight is due to residual behavioral reluctance to eat caused by pain and suffering with swallowing when he was untreated. Our plan now is to keep him on the steroid treatment, add a acid blocker and appetite suppressant, feed him high calorie foods and formula, and try to get him to gain weight that way. For now, Matt and I have chosen to continue the steroid, as taking out any more foods from his diet seems to be unlikely to allow him to gain weight and we still hope he can get adequate nutrition orally. His growth is important, as is proper nutrition for his developing brain. None of the options seems great, so we are trying to pick the "least bad" choices for him. Honestly, at this point, I am just praying that he will somehow start eating and grow. Please add your prayers to mine.
We did get to spend lots of time together in Ohio. When Matt had to leave for a couple of days, Aaron and I were "just the two of us", which was pretty fun (when he wasn't spitting/throwing food back at me) He got very spoiled sleeping in the big bed with Mommy and watching a lot of Handy Manny. Sam joined us later in the week and we all went to the Zoo and the Aquarium after AJs appts. Aaron was a trooper for all his tests and Sam was a super supportive big brother, I was very proud of both of them.
Iwill add some fall pictures soon!