The primary symptom of PANDAS is sudden-onset OCD. I knew that I had baffling episodes of OCD. Why not see if I had PANDAS? Maybe I’ve had it for most of my life.
As I already knew a fantastic PANDAS clinician, Super Amy, I decided to pursue finding out if I had PANDAS. Super Amy ordered a test called the Cunningham Panel, a blood panel designed to reveal evidence of autoantibodies that have targeted the brain. If the autoantibodies are present, then the idea is that my brain becomes inflamed as the result of a mis-firing immune system whenever I get sick.
Why not? The test is very expensive and insurance will not pay for it, but our family, though blessed with fantastic health insurance, has already paid thousands of dollars over the years for out of pocket expenses related to OCD, among other mental health concerns.
The wait for results felt impossible. It came back positive. I was not sure what to think or feel. But I new that the next step the journey is to find out “Why?” What are my underlying infections?
Concerned about our mounting medical bills, I decided to see if Dr. Hashi and Dr. Rookie would help me by ordering a slew of blood tests to look for viral and bacterial infections. As practitioners in a world-renown medical clinic, I felt like their support and advocacy would be an asset in seeking (1) great care and (2) maximum benefits from our insurance for PANDAS care. And for those of you who have walked down the path of seeking treatment, and coverage, for PANDAS, you are probably laughing through your tears at how naive I was.
Categories: The story continues