My 5 year old son has proximal muscle weakness, CK levels are at 4800,
his liver enzymes are elevated and his muscle biospy showed mild muscle
myopathy. He did the genetic testing for Dueschenne's MD and that came
back negative, however stated still a 30% chance he could have it. We
have been to 2 Nueorologist's who do not agree on his diagnosis. One
said most likely some type of metabolic disorder and the other thinks
it is some form of MD. This has been going on for a year now, and is
extremely frustrating.

Is there a pediatric hospital, or a doctor known for diagnosing and
treating children w/ complex nueuromuscular disorders?

Also, are there any other tests that would be helpful and figuring out
what is wrong w/ him?