20K later! I was told to drink water, compressions stocking, increase the florinef and the only new thing they added was propanalol. If they find a good electro, is better. All I wanted was the testing and make sure I didn't have other issues but they didn't dig anyways.
There is no cure so there is a lot of self management, I tell the doctor when I need to increase my med. And learn to self regulate. I imagine kids is harder.
We're hoping that since the kids have been doing the water and electrolytes and their symptoms are still quite severe, that Vanderbilt will look at the variations of OI and prescribe some appropriate meds that the kids' peds doctor isn't willing to try. Right now they're not getting much of anything in the way of meds.
Unfortunately, our local medical monopoly "doesn't do dysautonomia" even though they have a big cardiology unit and several electrophysiologists. They only want to do the easy, routine stuff that makes them easy money.
If we want decent dysautonomia treatment we have to go elsewhere... and that elsewhere is not easy to find.
That is about the gist of what I have heard too, yet they also say it depends on the doctor--whom you can't choose!
That's my biggest fear -- that they'll make the long trip down there, probably PEMing the kids in the process, and they'll get one of the dumb-ass doctors so it will all be a waste. But all we can do is try, I suppose. Since both the kids' parents are doctors, I'm hoping that will give them a little edge, at least, although I understand doctors don't mind talking down to other doctors the same as they do to us laypeople.