Ok, we were supposed to wait while our Neurologist is contacting Dr. Scott out in Boston and Dr. Meyer at Mayo. As of 5:30 last night he hadn't talked to either of them yet.
Last night I was up in the wee hours, and remembered that years ago Dr. Scott was VERY easy to get in touch with. So I looked him up and emailed him. I hit "send" and 4:35 this morning. At 5:28 he replied!!!!
It's clear from his reply that he has NOT heard from our dr. yet. This really irritates me!!!
Ms. Spring, I don't remember your daughter's studies, but most kids with
moyamoya -- and certainly those with Down Syndrome-- have a progressive story with one stroke after another. They should undergo revascularization surgery when the diagnosis is made -- of course, providing that the arteriogram, etc show the appropriate disease., and I am certain that this is what I told you years ago. I am attaching an article on Down and moyamoya that we published last year. Your daughter needs an arteriogram and surgery should be considered for her at this point. If you would like to come to Boston for evaluation and treatment, I would be happy to help with her care. Please contact my office
I've already left a message with our neuro's nurse. I tried to be nice. I tried to be nice. I tried to be nice.