MaryAngela Posted May 20, 2018 Report Share Posted May 20, 2018 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. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted May 20, 2018 Report Share Posted May 20, 2018 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? Link to comment Share on other sites More sharing options...
MaryAngela Posted May 20, 2018 Author Report Share Posted May 20, 2018 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. Link to comment Share on other sites More sharing options...
libera Posted May 22, 2018 Report Share Posted May 22, 2018 I'm also in the Chicago area . . . would be interested in meeting up. Link to comment Share on other sites More sharing options...
MaryAngela Posted May 22, 2018 Author Report Share Posted May 22, 2018 My email address is: mshuminas@comcast.net Please contact me, if you’re interested. Link to comment Share on other sites More sharing options...
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