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[quote=Anonymous][quote=Anonymous]PANDAS PP, can you please share what age your son was when he was diagnosed with PANDAS?  My child is suffering from sudden onset of severe OCD, and I am feeling hopeless in trying to get him evaluated and treated.  My pediatrician really knows nothing about PANDAS and referred me to a neurologist who was pretty unhelpful as well.  They both offered to write him a prescription for an SSRI, but neither one would treat him with antibiotics, steroids or the other therapies being investigated for PANDAS - mostly because his strep test was negative.  While I am open to the SSRI, I would also like him to be evaluated and if an infection/inflammation (not picked up by the Rapid Strep) is ongoing to have it eradicated.  Because of the strep test being negative, we are also not eligible for the NIH study.  In any case, my son is not even 4 yet so I don't know if ERP would even be a possibility for him.  Where did you go for ERP?  Sorry for all the questions.  Just so desperate to want to find help for him.  TIA.[/quote]

DS had first episode when he was 6 following chicken pox (NIH was interested in him because they were noticing PANDAS as the result of viruses).  Next at 7 after strep.  Then 7 and a half, also strep.  This was a while ago, and this episode happened at about the time the NIH researchers published their first paper on PANDAS.

Then 9 and a half following strep.  From research prior to last episode was pretty sure PANDAS, but pediatrician rejected theory.  We switched pediatricians and new one made a couple of calls with colleagues who said if it were my child I'd have on antibiotics, which he went on at about 10.  But the situation had become very chronic at this point.  At 10 and a half he went to the NIH and Dr. Swedo confirmed PANDAS dx.

With further research, learned about ERP and pursued as only avenue left.  We went to the Behavior Therapy Center of Greater Washington and did ERP twice a week for a year and a half.  On the whole, very successful, but it was a long road.  DS was actually subject of two write ups about use of ERP for what BTC called Tourettic OCD.  This tided him through high school.  Got strep again end of college freshman year and had to go through the whole thing again.  At this point patient of Dr. Beth Latimer.

In terms of your negative strep test, did they do titers (both ASO and antiDNASE-B)?  I am pretty sure ERP can be done with a 4 year old as it requires no insight on the part of the patient.[/quote]

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