Its so hard waiting, I know when I had the CVS I was waiting longer then expected and it was torture. Have you taken him to neurologist or MD clinic?
Wishing you all the best Dawn. Hang in there.
Thats all we did was PT meet with Neurologist.
I'm assuming he had an elevated CPK?
Is it a multidisciplinary clinic that you've been seen at? If not, and your insurance covers it, or you have the financial means, you may want to get an appointment at one of the larger, multidisciplinary clinics. If it is duchenne or becker, you'll probably want to do that eventually, if you're able. It can take months to get an appointment at some of them, so you might consider getting something set up now.