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!

So you may have been following my story. Non pandas DS has strep and is setting off a flare in my PANDAS ds. They are twins (fraternal). Non PANDAS ds has never shown any signs of PANDAS. He is a very even keeled kid and pretty rational. He is high energy and doesn't listen all the time but he is 6 so I chalk it up to normal behavior.
 
Last night he was prushing his teeth and instead of spitting in the sink he spit all over the mirror. DH punished him. While I was tucking him in for bed he seemed very sad so I asked him what was wrong. he said he wanted to kill himself. I was FREAKED OUT. I asked him why and he said because he is bad and has bad thoughts. So I asked him what his bad thoughts were and he said it was things like eating candy and drinking lemonade (Things I don't allow him to do anymore sinc we are on clean diets). So I told him those things were not bad thoughts and that he is not a bad child at all and that we love him and would be devastated if he hurt himself. He promised not to ever say anything like that again. He saw how upset it made me.
 
So now do I freak out and go insane that I have 2 PANDAS kids on my hands? Or is this just a normal thing that 6 year old tend to say when they are feeling attention deprived. Does this sound like PANDAS?
 
I mean he has no other symptoms at all. I don't want to make things up that don't exist but I will tell you last night freaked me out.
I am keeping a close eye on him. It just bothers me that this happened while he is on abx for a strep infections.
 
Thoughts? Please talk me off the edge.

I don't think I've ever talked to you before! I'm a P.A.N.D.A.S. teen. I'm sure you already know this, but I'm sure I speak for all of us when I say we don't mean to act the way we do. I obviously can't say much as to parenting us (can't even imagine, really), but if you ever need a second opinion or something like that, feel free to bounce any ideas off of me. I love talking.