EAMom Posted October 30, 2010 Report Share Posted October 30, 2010 I was thinking about this thread this afternoon. The bright kids have bright parents who were able to figure out the PANDAS diagnosis often with little or no medical help - sometimes even with medical interference. These parents are online searching for answers and options. Meanwhile I can't help but think there must be children of all levels of intelligence with PANDAS whose parents are accepting the advice of their doctors (as I did for almost 4 years). So these kids are being misdiagnosed and mislabeled and filed away into the world of mental illness and no one stops to question why. It scares me and makes me angry. That was our situation for 4 years, and as much as I would love to take credit for figuring this out on my own, it all came down to a suggestion from a friend to look at strep. But I'll still take the credit for being able to act on that suggestion with non-stop research and tenacity when it came to convincing doctors. Just thinking out loud... I completely agree. You either need to be a bright (and persistent) parent to come up with a PANDAS diagnosis... or at least be very lucky with "classic" onset and an on-the-ball PANDAS believing doc. It's the bright inquiring parents that end up on this forum. These are the parents have resources (time, intelligence, persistence, some financial resources, decent health insurance) to pursue treatment with a PANDAS specialist. And Emerson, well, to get where you are without strong parental support...you are just super-amazing. I can't imagine doing what you are doing at age 15. Link to comment Share on other sites More sharing options...
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