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I've always been hesitate to say my dd has pandas/pans even though we recognized 7 of 7 clinical symptoms because until recently none of the tests run were conclusive or corroborated. My problem has always been that none of the doctors have been willing to make the diagnosis. Without really knowing about the professional community, I feel like the neurological community is fighting over definitions and getting credit for discovery because I had doctors say to me that they don't believe in pandas. My reaction is what the does that mean? I've received this attitude toward treating dd and can't understand other than to conclude that there is some sort of code taught to them that makes them think this way. I want to understand what the best options are for treating dd going forward and what has helped get the professionals get on the same page is keeping detailed records.

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I haven't been on the forum for a while, but thought I'd check in and saw this post. Since it hits close to home for us here's my 2 cents: DS14 had PEX via Dr. L in Dec 2013...we live in WA state, so orchestrating everything from the office visit w/ Dr. L to get the ball rolling for Pheresis through to the actual GTU procedure was anything but easy.



I believe that it turned out to be the game changer for his mental state, but we had 2 months of complete and utter nightmare following it before the change began....AND I had no idea what to expect and what to do w/ the crazy child (how he could have gotten any more depressed or schizo is beyond me, oh but he did) I had on my hands afterwards. Dr L is wonderful but being so far away didn't make for easy communication. She did share that the PEX can cause additional inflammation to the brain before it settles down, and my sons brain was already so on fire it just added insult to injury. He was definitely an anomaly though, I have only found a handful of other kids who reacted this way.


If you are interested please PM me and I will share details but ultimately for us it was more than worth it, even w/ the added craziness. It wasn't the only thing that has gotten him to where he is now (goes to school after missing all 3 years of middle school, swims for club team, is just OUT in the world again after 3 years of being a shut in who only wanted to die), the Lyme treatment seems to be helping as well so we are just holding our breath when he has little setbacks and hoping that they pass.

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