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Dear michele 223:
Since you live in Canton, OH, have you called to contact the Pediatric Neurologists at nearby Akron Children's Hospital? Call(NNN) NNN-NNNNor 1-800-358-5437 (1-800-358-KIDS) and ask if Dr. Enlow, Dr. Kulasekaran, or Dr. Timmons would assist in the medical management of a child with PANDAS. Dr. John Bower and Dr. Blaise Congeni of the Pediatric Infectious Diseases department may also assist in your son's care.
The journal article you referenced does support the use of erythromycin or azithromycin (or even IV cephalothin) versus strep bacteria carrier status, but not specifically versus PANDAS, where ongoing neuropsychiatric symptoms become particularly prominent with each episode of strep infection. If your son has been tested and confirmed to be a strep carrier, then his PANDAS symptoms could be expected to be continuous. Whether a strep carrier or not, I can see the sense of erythromycin or azithromycin prophylaxis versus PANDAS. I agree with Dr. Grinshteyn that the primary care physician could prescribe the macrolide antibiotic prophylaxis while the neurologist or psychiatrist managed the episodic neuropsychiatric symptoms. I might suggest the names of Pediatric Infectious Disease specialists at the children's hospital here in Norfolk, Virginia, but I am unfamiliar with Dr. Kovasovick or Dr. Gilbert. Still, it would not hurt to do a consultation with either of them to obtain a treatment plan that could be taken home to Canton and followed by your local physicians (perhaps with annual follow-up with the PANDAS specialist).
Here is an article that supports penicillin or azithromycin for PANDAS prophylaxis: http://www.ncbi.nlm.nih.gov/pubmed/15820236 . Perhaps relaying this article to Dr. Congeni would change his mind about the choice of antibiotic? If not him, then the primary doctor may use this data to write the prophylactic antibiotic prescriptions as well.
His constant toe curling does sound like an OCD tic, so management of the OCD would be the goal to stop this (i.e., it would be difficult or even pointless to train him in a substitute behavior for his feet). If he is actually putting weight on his toes while curling them, then this could lead to orthopedic concerns (e.g., male and female ballet dancers wear very hard toe shoes to protect their toes while standing en pointe). Wearing a normal hard-sole shoe, perhaps with padding at the toe area, could be a protective measure versus weight bearing. An orthopedic study has shown no finger damage from frequent joint cracking.
Even here in Virginia, there has been growing bacterial resistance to azithromycin, so I can understand the pediatrician's concern. You may show the article data to Dr. Congeni or the primary doctor and request an azithromycin trial. I am not sure what else would change their minds. Tonsil and/or adenoid removal might help lessen occurrences, but it is still possible to contract strep infection, the trigger for PANDAS exacerbation, even without these glands. In a calm monotone, you might mention once or twice (or perhaps once a week) that you would like him to stop walking on curled toes so his feet don't get hurt, but don't constantly draw attention to the habit, or it may worsen. A psychologist/psychiatrist with a pediatric focus does make sense. A care plan from the managing doctor, counselor, and/or occupational therapist that clarifies the steps the school should take would facilitate their staff involvement (e.g., instructions to remind him to walk with his heels flat). Often the school counselor can help relay such a plan to all pertinent staff.
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If you are unable to contact Dr. Benore's office directly, ask your Akron Children's Hospital neurologist or infectious disease specialist to personally give Dr. Benore a courtesy call requesting evaluation of your son (an insurance authorization from the specialist or primary doctor may be needed for such evaluation). After reviewing the azithromycin article data I provided, I am surprised as to why your pediatrician or Dr. Congeni, my former residency preceptor, would not be willing to prescribe this antibiotic per your request. Did you have them read the article printout while you were present and then give their opinion about an azithromycin trial? Unfortunately, experts in rare conditions are often just as rare. Finding a PANDAS expert close to your location may require the tedious step of researching the clinicians referenced in the bibliography of a reliable PANDAS article. Consider an email to Dr. L. A. Snider, one of the azithromycin article authors, to ask if s/he knows of medical colleagues in Ohio that may help you (copy/paste this address into your "e-mail to" slot: firstname.lastname@example.org).