Re: New to group-not to Mito

[Guest guest]

Hi ,

I hear you, we've been exactly where you are. You aren't alone any more! I wish this grou was around ten years ago, everyone here seems so caring and knowlegable. I still have to explain to doctors what MITO is, but at least we now have one doc that knows what it is, and then this group. Does the insurance exlain why they won't cover Carnitor? It is prescription only (you can get otc carnitine but it isn't pharmaceutical strength). This is the approved treatment for this condition, and even if it's off formulary, unless you have very limited coverage they should cover it.

ALSO, contact social security: your child has a legitimate disability now, and qualifies for SSI and MEDICAID (under the medically needy children provision). That should help a lot with medications and doctor bills.

kj

mom to De-Arbra age 16