Hello @pmross, Thank you for starting this discussion. I was going to share another link when I responded to your first post in another discussion but wasn't sure. You mentioned your daughter also has Hypokalemia and I was wondering if the periodic paralysis may be connected somehow. Here's the research I found earlier:
-- Hypokalemic Periodic Paralysis: https://www.ncbi.nlm.nih.gov/books/NBK559178/

Here are a couple of related discussions that might be helpful while you wait for others to respond:
-- Periodic Paralysis or Hypokalemic Periodic Paralysis: https://connect.mayoclinic.org/discussion/periodic-paralysis-or-hypokalemic-periodic-paralysis/
-- Chronic Fatigue Syndrome and Temporary Paralysis? https://connect.mayoclinic.org/discussion/chronic-fatigue-syndrome-and-temporary-paralysis/

I think @amber3212 may also have some experience to share. You mentioned the teaching hospital wanted to do a genetic test but insurance denied it. I think you can use an appeals process with the insurance company if the genetic testing is needed to confirm a diagnosis. Here's some information I found that may be helpful - https://www.counterforcehealth.org/post/the-ultimate-guide-to-overcoming-genetic-testing-insurance-denials-in-2025-proven-strategies-for-patients-and-families/.