just found this thread and wanted to bump it.
neurologist just mentioned testing for this and I think we are headed down that route.
DD has practically something on every level.....
The only thing is she hasn't ever really been medicall ill. two ear infections as a child and a only a couple colds since. she definitely has the developmental delays and autonomic dysfunction, deafness, strabismus, suspected hypotonic cp......the list goes on. Does this mean hers would not be progressive? (just the word progressive scares me as she is just now doing so much better progressing developmentally, I would hate to see her regress!)
Also we just did a water deprivation test where they were looking for diabetes inspidous but I know they tested urine and blood every hour. I do have those results........would the testing for this be different than testing for initial mito things?
Any advice would be GREATLY appreciated!