The search for PANDAS information is harder than the search for Congenital Lyme data. It isn’t a cute little bear, I can tell you that. It’s more than that. The folks at my local university medical hospital work to discredit the research that is out there. My primary doc that works with my little guy had never heard of PANDAS, and yet, it was Finn’s therapist who has been pushing us for a complete evaluation. Seriously? I need another controversial, hard-to-diagnose, hard-to-treat disease in my kids body as much as I need another one in my own.
Today, I mentioned the disease which is known as Pediatric Autoimmune Neuropsychiatric Disorder and is believed to occur after strep, to my neurologist. He said, “Oh, that’s a bad one. It’s controversial and difficult to treat. I hope it isn’t that.” But that’s all I’ve heard. I have a suspicion that there’s a connection between bartonella and PANDAS. My little guy’s OCD was most intense AFTER he had limited treatment for Bartonella and it got better with many months of zith. But it appears to be back. His last fever/vomit/sick nightmare, around his birthday in October set something off. A new infection? A reinfection? An immaculate conception? I never know. I don’t even want to know, really.
I’ve called a lot of doctors about seeing my guy and so far no one seems particularly interested in him. But today, I called a doc in Iowa who, with a referral from a primary doc, will see him. It is POSSIBLE that our insurance will cover the visit, but if not, it will be something do-able. Or credit card-able.
PANDAS. Who is out there blogging about PANDAS? I need to learn more.