Why oh why can't there be easy answers about what is going on with Handsome? After spending all afternoon at Children's Hospital, I came home more confused than ever.
He had another swallowing study done (a x-ray camera filmed video as he consumed barium laced products) and it showed that he still aspirates fluid every time he drinks. And, when he's eating, he sometimes doesn't realize he has food in the back of his mouth and thus doesn't swallow it. This likely is what is happening when he eats meat at home and probably is why he doesn't like it. Their theory is that, as a coping mechanism, his body has desensitized the back of his mouth/throat so that he doesn't feel as much pain from his reflux--but unfortunately this also means he can't swallow properly. They think that getting the reflux under control (we've been working on this for two years!) will help as will a bit of feeding therapy.
Unfortunately there is another theory on Handsome's swallowing problems. The pulmonologists think there is a chance he has Chiari Malformation. Basically their theory is that it is possible that part of his brain stem is pushing down into his spine and compressing the nerves there that control swallowing. So they want him to see a neurologist and go under sedation for a 40 minute MRI. While he's under anesthesia, they also want an ENT doctor to scope his nasal passages and make sure everything is connected properly.
The treatment for Chiari Malformation is a brain surgery, referred to as decompression surgery, where neurosurgeouns remove a really small portion of the patient's skull to provide more room for the brain.
After spending hours researching Chiari Malformation last night, I really really do NOT think this is Handsome's problem. There are two main types of this disease (and two others that are really rare and don't apply to him at all) and the first type is seen more in older children and adults--and most of those people experience blinding headaches that appear out of nowhere. The second type is seen almost entirely in children with spina bifida or hydrocephalus...and Handsome has neither of those.
Still, I can't entirely discount this...but I'm reluctant to put him through an MRI that I'm not entirely convinced he needs. I was convinced in the hospital yesterday, but now I'm not so sure.
We go back on Friday, but we'll be seeing the GI specialist this time.
Needless to say, my mind is spinning.