What the hell is PANDAS and how do I get my kid tested/treated?

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.

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11 responses to “What the hell is PANDAS and how do I get my kid tested/treated?

  1. Have you read-
    Saving Sammy: Curing the Boy Who Caught OCD by Beth Alison Maloney (Sep 22, 2009)

    It’s a good read. I would think most LLMD’s would be open to treating it, no? Sorry mama. Hang in there

  2. Margaret Behrns

    Get on the autism support groups they are very schooled in PANDAS.

  3. http://www.latitudes.org/forums/

    Very good website lots of info! There is a PANDAS section, also Lyme.

  4. http://www.latitudes.org/forums/

    There is a PANDAS section and also Lyme. Lots of great info from parents going through the same things.

  5. There’s a doctor at USF in Florida named Dr. Murphy, that is one of the leading researchers on PANDAS you might want to see about contacting the college to see about meriting with her. I hope your son gets better.

  6. Dr. Murphy at USF in Florida is one of the leading researchers on PANDAS, you might want to contact the college to see about getting an appoiment to meet with her. I have PANDAS as well and tried this but they said she only works with people under 18. I hope your son gets better.

  7. I forgot to post this link, it even has Dr. Murphy’s email: http://health.usf.edu/medicine/psychiatry/faculty/staff_murphy.htm

  8. Latitudes.com they have posting boards o subjects such as Lyme and PANs/PANDAS.

  9. Have you been to a LLMD? My daughter has all the symptoms of Pandas. I’m not even going to go there with Lyme Illiterate docs. We treat with the Rife Frequencies and we are so amazed and how fortunate we are to have learned about the Rife. Antibiotics are such s hit and miss. I just wonder where this Strep comes from?

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