Posted by kevin Low on August 20, 2003 at 16:52:57:
In Reply to: Danielle posted by Nancy on August 19, 2003 at 16:38:11:
Nancy, below is basically a copy of the same message I just sent to another inquiry about Danny. I'll try to keep you up-to-date as we hopefully progress forward. Good luck with your follow up. Hope everything is going well. You ARE giving me (us) support by just by asking!
Thank you so much for your concern. I hadn't been out to this site for a few days. My sister sent me a message telling me I had a couple of inquiries out here.
Getting through all of the "red tape" is so slow and frustrating! When Danielle had this stroke, she was moved to some special state children's medical insurance. It is part of the Michigan Medicare system. Anyway, her parents were informed that they had to follow the referral path in order for them to cover any expenses. If they chose to go somewhere else (like to Boston or Stanford) on their own, they would be on their own as far as the expenses. They had been referred to the University of Michigan Children's Hospital. When the FINALLY got to go meet with them, they got them to agree to refer to Dr. Scott in Boston as if that is what they wanted as the head neurologist at Michigan knew him personally. We just weren't confident that they had the appropriate experience with this condition there and quite frankly, they have not been very understanding and communicative.
Anyway her test is now finally scheduled for September 8th at U of M. From there they should get referred to Boston and will get the appropriate surgery scheduled. Just praying that she has no further problems before this can all happen.
I have to say that both inquires to what seem to be the "specialists" in this disease (at Stanford and Boston), were almost immediate. Dr. Steinberg and Dr. Scott both reviewed her file immediately upon receipt. All are in agreement that this test to confirm the diagnosis and determine the proper surgical procedure was the next step. Both of these doctor's and their staff have been VERY responsive, considerate and caring.
Again thanks for your concern and thoughts.