Dedee

Yes, Thank you. I would love guidance on who you would reccomend. We live in the south, and finally spoke to one infectious disease specialist who was familiar with PANDAS and he is sure my son meets all the criteria. However, he doesn't really know of much that is being done other than antiobiotic therapy. So he really wasn't much help. Seems most people are sure he has it now, but not so sure what to do about it. Ugh! Meanwhile my poor baby is all strung out on this medicine they gave him to control these tics and can barely stay awake. I am so confused....

Thanks so much for the information. Yes my son did take antibiotics, but only for the normal 10 days. When his OCD was diagnosed at age 5, it was two weeks after his strep infection and no further antiobiotics were given. He was placed on a SSRI, and his OCD symptoms seem to get better. He had a reccurent episode at age 7 after another strept episode and his SSRI had to be increased. Again, no one ever mentioned PANDAS to us and I was totally clueless. It wasn't until this year when he began having one infection after another and then the sudden onset of tic disorder that I began doing my own research and found out about PANDAS. His pediatrician has never heard of it. I am currently trying to find an immunologist to take him to, I am so desperate to find some kind of help for my son. But how do I know if the immunologist has experience in this? Whenever I mention PANDAS to any other healthcare provider they all look at me like I am crazy. I just don't know where to turn. I feel totally helpless and overwhelmed, but I am determined to get my son the help he needs. Thanks for the information on labs, thats a start. Dedee

I can not believe I have just now found this forum. I have a 10 year old who was diagnosed with OCD after a strept infection when he was 5. He has continued to suffer with OCD and anxiety disorder after flare ups over the years. On Thanksgiving day, three days following an acute strept infection he began having severe tics. His pediatrician and psychiatrist have put him on a low dose antipsychotic to decrease the episodes, but his behavior is changing and I suspect that he suffers from PANDAS. The problem is my pediatrician is not familiar with this. I am an RN and I think she would listen to me if I could tell her what labs she needs to run to check and confirm and refer him out to a specialist. He has had strept 4 times in the last 3 months, his grades are dropping, and now the tic disorder. I am desperate to help my son. Everything I have read about PANDAS sounds just like him and I can't believe I haven't heard about it before now. Even his psychiatrist hasn't mentioned PANDAS to me and she has treated him since he was 5 and is aware of the strept relationship. If I could get the diagnosis confirmed via labs, I thinks I could make a believer out of them. Could anyone tell me what labs need to be ordered? Please help..... Dedee