So sorry you are going through this. My daughter also has PANS. She went undiagnosed for 10 years. Happy to report she is now doing well with proper treatment. I wanted to let you know there is also a Private facebook page for Panents of kids with PANDAS/PANS. You need to be approved first to join. I would be happy to assist you. My email is firstname.lastname@example.org. My daughter now speaks with many kids who are struggling. If he would ever like to chat/skype/text with her let me know. There is also a private FB page just for kids to connect,it is monitored by the adults. She is very active on there too.