spectrum disorder and PANDAS

[michele223]

My son has PANDAS and tics and compulsions and ADHD. We have been dealing with his symptoms for five years. How do you find a Dr. who understand and can help you deal with this horrible disease? I don't know how to deal with these repetitive behaviors he gets after illness or being around strep. This fall he has been exposed to strep and he is now doing toe curling tics and finger cracking over and over. It is going on six weeks since they started. He is on zoloft for anxiety, abilify for the moods and attention and tics. Omnicef for the strep reaction. How do I know if the meds are working if he is still having these bad flair ups?.He is so sensitive and cries so easily. I notice him overreacting to things. He is in OT for the fine, gross, and visual motor delays and sensory issues, I feel now he is being treated in pieces. Tics and attention and anxiety by the neuro and  antibiotics for the PANDAS by the immunologist who is no longer practicing. His ped knows nothing about PANDAS. I am so scared that I won't be able to get him antibiotics soon. A psychiatrist who studies PANDAS. in Florida diagnosed him but she won't write scripts across states. Should I consider IVIG and does it work in these persistent cases? Can you help me find a Dr. to treat PANDAS in NE OH? It is like fishing to find a Dr for this. Another issue is the school. How do you get them to understand the affects of the stress and illness on him? My son is average ability so doesn't qualify for SPE but seems to have difficulty with some concepts mainly Math because he has the dysgraphia and visual perception trouble, The school is not very supportive other then giving him OT. They look at me like and I am making this up despite I came to his meeting armed with info on his disorder but they didn't want to listen. How do you deal with a disorder that is treated with such skepticism? Is this on the autistic spectrum? Would a spectrum diagnosis help him with the school?

[Rebecca Resnik, PsyD]

Hello,
   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).

Best Wishes
Rebecca Resnik
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.

[michele223]

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?