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I know there is a Facebook support page for PANDAS/PANS, but are there any in-person support groups or “Meet Ups” for PANDAS/PANS in the Chicago area?  My DS 13 had his first major onset of PANDAS at 8 years old after a dental appointment (although we now believe his first onset was at 14 months old when he stopped eating solid food after a virus). We struggled for years to get a diagnosis and treatment.  I would love to share information with other parents, regarding treatment, and how to recover from the trauma and years lost to this disorder.  

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Hi Maryangela --

We're in the Chicago area and I'm unaware of any local face-to-face support groups, though, admittedly, I'm not active in the Facebook group.  I'm guessing that between work, family and the additional demands PANDAS puts on all of us, finding the opportunity to meet up on a regular basis is a tough one.  That's why I check in here at least a couple of times each week...I can do it when I can steal a moment from all the other stuff!  ;-)

We did once have a day-long "retreat" at a motel outside Indy that a bunch of us Midwestern families were able to attend; there were folks there from Illinois, Indiana, Michigan and Wisconsin, as I recall.  Maybe another "summit" like that would be something to see if we can manage?

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Thanks, MomWithOCDson.  I’ve been reading posts on this forum for over a year, but just joined this week.  I am grateful for your frequent contributions.  You have a lot of valuable insight.  

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