Hello All,
I am a new member and the mother of a 14-year-old girl who has PANDAS. She had strep 4 times the winter she was six years old and immediately exhibited symptoms of PANDAS (excessive urination and then obsessive hand washing). We dealt with that for months and then the symptoms went away when we threw the whole family in the van and spent the summer camping around the country. Not many opportunities to wash your hands compulsively when you have no access to running water!
At the time I did research and sent info to her Kaiser pediatrician about PANDAS and he basically said "it's not a real diagnosis". He said "we treat the strep and then treat the OCD separately" and never shall the two meet.
Fast forward to 8 years later, this April, when she got strep again. Within a week to 10 days she was in full blown OCD with washing, checking, severe fear of infestation by lice and contamination, angry outbursts, and more. I tried to get her good psych help with Kaiser and it was ridiculous -- therapists inexperienced with OCD, a therapist who did a half-hearted attempt at CBT, 3 week wait to even get an appt for we parents to talk with the therapist. It was not helping and my daughter was suffering. So we went out of network and are paying out of pocket for an OCD-experienced psychologist to see her twice per week and do intensive CBT.
After reading much on this board and Pandasppn.org, I want to get my daughter on a course of antibiotics. I wrote again to her Kaiser pediatrician (who is out of the office for a week) basically begging to try this therapy and referring him to the Pandasppn.org website. What I got was this response from a different ped who was covering:
"PANS/PANDA is indeed still not well enough understood to have a scientifically sufficiently proven therapy. You can certainly write Dr. Dow another email and I will leave it in his inbox till his return. But I am fairly certain that his position is not different from the rest of the pediatricians in our department and that he would not prescribe antibiotics in this circumstance. That is not to say that a given person may not have a dramatic positive change after a non-standard treatment. It's simply that we cannot endorse treatments that are not the standard of care and have not been scientifically sufficiently proven. That would be more for careful research studies. I am sorry to write the above, I am sure that's not what you wanted to here"
I am not holding out hope that her regular ped will break ranks and prescribe antibiotics. I need to know how to go about finding a doctor in the SF/Marin, CA area who is open to trying this therapy. Please let me know what you all have done to get your children treated.
We are not in one of the four counties served by Stanford PANDAS clinic.
Thank you in advance for sharing your wisdom. Jennifer
