Today was an exhausting day. It began with Rob taking Evan to physical therapy while I dropped Aria off at school. Then at noon we rushed into D.C. for an appointment at Children's Hospital only to find out that our appointment was actually in Fairfax, VA--shit!! All was not lost though and they were able to see us at 3:30 in Fairfax and Aria got to spend an entire afternoon with Uncle Chuck who picked her up at school. I hear he is now an ace at Chutes & Ladders, but watch out, he cheats!
It was very interesting to talk to another neurologist and we're getting to the point where we understand most of the lingo, which is nice. One of the things that is most fascinating is that doctors who see Evan seem to take everything lightly until they look at his MRI films, then everything changes and they start talking about acting more quickly to get a surgical consult. It's understandable that everyone thinks he's fine at first though because he is doing great developmentally and is a happy, verbal, interactive kid who just seems to walk more like a child 6-9 months younger. After they look at the films the room starts spinning and they start talking faster.
Dr. Chang was no exception. She spent an hour and a half with us and really took her time learning about Evan's history and going over his MRIs with us. She is going to take the films to Children's Hospital in DC tomorrow to show them to the entire staff of the epilepsy center at their weekly meeting. She told us they will be very interested in him and asked if we would want to talk to the doctors at the epilepsy center there. I think we're more interested in Johns Hopkins at the moment though. Any epilepsy center we go to is going to want to do another MRI and a week-long video EEG where Evan would be admitted to the hospital for a week while hooked up to an EEG and videotaped the whole time. We just don't want to put Evan through that more than once.
The basic feedback from Dr. Chang is that there are two spots on his brain that need more evaluation. She said if Evan was her patient she would treat the seizures (that are happening daily now) more aggressively with a different medication, have a more recent MRI done, check him into the hospital for a week-long video EEG and send him for a surgery consult. It sounded like she would have all this done in the next month. If we proceed with our appointment at Johns Hopkins we're only a few weeks slower than what Dr. Chang's timeline would be. She's going to call us on Friday morning to talk to us about what the staff at the epilepsy center says and that should be an interesting conversation.