We have been thinking about switching doctors for Evan for quite some time and it looks like we're moving in that direction now. Perhaps we are fickle, demanding, picky, difficult, etc. but it just seems like it's time for us to move to a different hospital for Evan's treatment. It has taken us a long time to come to this conclusion, because the hospitals we're looking at are out-of-state. There aren't a lot of doctors in the county who specialize in TSC, so the choices are limited.
The two doctors we are looking at are Dr. Orrin Devinsky (in NYC) and Dr. Elizabeth Thiele (in Boston). They are both in the top of their field and are widely respected. We've spoken to each of them and really liked both, so it's a tough choice.
In researching the two doctors we also came across a very comprehensive website on TSC that was created by Massachusetts General Hospital and features Dr. Thiele. It does a really good job of thoroughly explaining the disease. Check it out if you are interested...
Stay tuned, I'm sure there will be more info to come shortly.