I’m sorry to hear about everything you’re dealing with. I too have EDS and POTS but also MCAS. My 4 1/2 yr old son has EDS and MCAS and our road has also been a challenging one.
Here’s a bit of our experiences:
I don’t know if you’ve ever looked into MCAS (mast cell activation syndrome) but some doctors believe POTs is actually MCAS and that if you control the MCAS you’ll also control the POTS. For me, I was able to figure out my POTS triggers and with the help of H1/ H2 blockers, Singulair, and Cromolyn my POTS symptoms are under control. They will reappear with reactions but resolve after I take the appropriate meds.
A HUGE POTS trigger for me was caffeine. Perhaps you and your daughter can take a look at her diet and eliminate caffeine, dyes, preservatives, additives and try to eat whole, organic foods. A daily food log might be helpful in figuring out triggers. Meds can also exacerbate POTS symptoms.
Hang in there, you’re doing a great job. Waiting for results is so hard.
Tina