Support Groups for PANS/PANDAS Teens?

[bmf152]

I have been searching but have not found any online support groups for teens with PANS/PANDAS. Does anyone know of any?

 

So many of these children are older now and smart enough to have an understanding of what is going on with them, but like parents and loved ones of PANS/PANDAS kids, they still need a place to vent/find support from others who understand what they're going through. Particularly in cases where teens are experiencing the depression and intrusive/negative thoughts, which seem to be very common and I know my sister falls into that category. I feel like since stress/anxiety plays such a huge part in exacerbating their symptoms, these threads, which are geared for their caregivers, would possibly be more stressful, seeing treatments that don't work & side effects, etc. But I think it could be so helpful for them to understand that they too are not alone and they aren't "crazy".

 

Maybe I'm being repetative because a site for them already exists....I hope so. If so, could someone please direct me to it?

 

Thanks a bunch!

[DebC]

There is a Facebook page (private) for Teens With PANDAS: https://www.facebook.com/groups/129017327268769/?ref=br_tf

 

I even found one for PANDAS siblings: https://www.facebook.com/groups/456841354386637/

[Guest]

I know of chronic illness places but they are for young adults. Still I feel isolated b/c people are much higher functioning and don't have immune mediated psychiatric problems.

Wish I could help but I think online and city support groups are lacking majorly........there are literally no support groups in my city and it's rather large here and I've met quite a few people with autoimmune disease. Very frustrating.

 

Hope y'all find some places!!!!

 

Oh btw, steer clear of any "depression" support groups. I joined one and all these men were messaging me asking me my age/sex/location. Also when I posted my introduction only one person responded and she told me to exercise and take vitamins.............. However I've found some good people online and we've created our own site for creatives or artists, it's just not finished yet......so I find support there.