Marie,
My daughter was recently diagnosed with Dysautonomia, after searching for answers for years (don't know yet what kind, will be going to Mayo next month for help). Hannah is now 18 and we are still struggling to find what helps and what doesn't. This is a TOUGH diagnosis!
Have you checked out www.dynakids.org ? They have a youth forum to help connect the kids dealing with this as well as a parent forum. I would start there.
Do you have a dysautonomia specialist following your daughter and her meds? I ask because florinef was not the right med for my daughter and we are still trying to figure out the right one. It is very individualized. You really need a doctor who understands this disorder and there are only a few in the US.
You are a GREAT parent for reaching out and seeking help! As a parent we can only force our children to do so much. It is wise to allow your child to have some control and learn what does and doesn't help her.
Stay strong, ok.
Lisa