Thanks momwithocdson. Luckily, I found a group right in my PEDS office. There bread and butter is CBT, and get this, they even run a summer camp that integrates fun with therapy that is covered by insurance....WOOOOHOOOOO!!!!!
My ds7 had rls as well. He had it a long time along with joint pain behind his knee. The interesting thing for us was that when he had his first major Pandas episode, (positive strep), he was on abx for 6 weeks. I never connected his leg issues with strep, but after abx for 6 weeks, his rls and joint pain went away 100%. Which leads me to believe that the strp was hiding out in his joints. I think the leg shaking was his way of dealing with the discomfort. If you read on Pandas, you will find that they believe that in Pandas kids, the strep hides in joints. The fact that his went away, and never ever returned, (even in new episodes), tells me that this was the cause. Could there still be hidden infection?
