I am sorry for the delay in answering your question, I just now saw it. I am familiar with the PANDAS work at NIH (http://intramural.nimh.nih.gov/pdn/web.htm), and I recently attended a conference where the research was critiqued. Keep in mind that this work is still young and controversial, and it is important for clinicians to be skeptical without ignoring a child's suffering. While strep may cause neurologically based changes in behavior, researchers do not know this for sure. The stress of having a painful strep throat may be enough to trigger increased compulsive behavior. While we do not really know at this point in time the true relationship between strep and behavior, the good news is that we do have effective ways of treating the symptoms.
It sounds like the best thing you can do is to obtain a thorough neuropsychological assessment. I am not sure from your post how your son was diagnosed with PANDAS, but it will be very important to learn exactly what is happening with your son's behavior and thinking. Pediatric neuropsychologists can be found in major medical centers and in pediatric hospitals as well as private clinics. A neuropsychologist is a psychologist with advanced training in medical conditions that impact thinking, learning, behavior and emotions. Their testing is generally more in-depth than most psychological assessments, and the neuropsychologist will give you a very good understanding of your child and what he needs. Your pediatrician should be able to make a referral for the assessment. Keep in mind that the pediatrician's job is to diagnose and treat the step infections if indeed that is what is occurring, so if the doctor is doing that responsibly, then you should not need an expert in PANDAS to treat your son's infections.
With regards to treating your son's symptoms, obsessions and compulsions respond quite well to a combined treatment that includes cognitive-behavioral therapy and anti-anxiety medication if they are severe enough to cause distress. This treatment should occur from a psychologist and a pediatric psychiatrist collaborating and communicating frequently. Occupational therapy may help your son get the sensory input he craves, though the research does not show that it is likely to produce strong results. Evidence indicates that the psychotherapy and psychiatric treatment should be your priority. The school is unlikely to provide much sensory integration therapy, as they are bound to address only motor problems that have a demonstrable educational impact (see www.nichcy.org for more information about special education).
Disclaimer: These posts in response to Medhelp.com questions are intended to be informational only. They should never be considered a substitute for face-to-face medical and mental health care by a qualified practitioner. Answering Medhelp questions is not intended to create or imply a patient-clinician relationship. Information presented in posts is not intended to give or to rule-out a diagnosis.
Don't any of the experts here have any experience on PANDAS/OCD/tics ? I believe it is a spectrum disorder. I need some support. Why are Dr's not better informed on how to treat something that literally changes your child's personality overnight? What should I be doing for my child? He has a compulsive need to stand up on his curled toes and apply pressure. Could this cause nerve damage? What about the sensory issues? Who do you suggest I take him to to treat the strep reaction? He obsesses on fixed interests. How can Dr's dispute this exists while children are out there suffering? As a parent having your child exhibit these behaviors and having to give them anti psychotic drugs at age six is horrible. I need a way to get him better and to get back the happy child he wants to be! Help?