JPdad

The more I read here, the more it seems that PANDAS often occurs in siblings. I have a 5 year old son with a PANDAS diagnosis, and am wondering what are the odds that my 3 year old girl might develop the same over time? I also have a 15 year old step daughter who is symptom free. I'd be interested to see how many kids each of you have and how many of those kids have PANDAS.

Yes, Children's Hospital of Pittsburgh. I was referred to their PANDAS "specialist" Dr. Judith Martin, who might just be the single worst doctor I have ever encountered in my life. She basically sat there and interviewed us on our first visit, with her back turned to my son typing into her computer. When she got enough info for her researched she told us thanks and to schedule a follow up in 6 months. Not once single piece of advice or treatment option other than take antibiotics when there is an infection. So we waited the 6 months for her next "PANDAS clinic" day where she again interviewed us, this time in the presence of a psychiatrist. They left the room, huddled in the hallway, and wouldn't you know it, the psychiatrist recommended that if there were still symptoms to set an appointment a psychiatrist. When I pressed her to offer another treatment, she reluctantly tried to test my son for strep. When he wouldn't open his mouth wide enough, she urged we 'go home and practice.' I went to my pediatrician the next day, had him tested, and they found a nasty double ear infection. After 2 days of augmentin he was back to normal. Thanks for the advice everyone. I am still processing it all to try and figure what to do next.

How have others found doctors who will treat PANDAS? I think my pediatrician is great, but her knowledge on this is limited. The "experts" she has sent us to have been zero help at all. I have searched and haven't found any good recommendations for docs in the Pittsburgh area. Who has prescribed the IVIG treatment fpr your kids? Was it a pediatrician, specialist or what???

So here is the story with my son over the past 9 months. He had a minor sore throat before Christmas which went away after a day or two so we didn't take him in to the doctor. About 2 weeks later he developed blinking tics, OCD arm tapping, adventitous movements, hyperactivity, and mood swings. At this point we went to our pediatrician concerning these issues and the first thing she did was test for strep, which was positive. After a week of antibiotics, he was 90% better with a full recovery taking about 5-6 weeks. He was fine for about 2 months, then he started getting a series of ear infections. Each infection brought a flare up of symptoms, but none were as bad as when he had strep. Long story short, we are 9 months into this and can't get any treatment for him other than antibiotics for an existing infection. We saw an ENT doc to try and get tubes in his ears for ear infections and possibly his Tonsils and Adenoids out, but he told us he'd have to have Strep 9 times in a year to get the tonsils out, and needed to have at least one more ear infection before he'd do tube and adeniod removal. (We've had 6 ear infections in 6 months.) We also made two trips to Childrens Hospital to see a Neurologist and a PANDAS "expert" at the Infectious Disease department. Their only treatment recommendations were antibiotics for infection and to see a psychiatrist for any movement disorders. I have seen a number of people on this board talk about IVIG, T&A removals etc... but all none of my doctors want to give us any treatment outside of antibiotics. Can anybody give me some guidance on how to get some treatments? I am in Pittsburgh, PA and can't find any real experts on this, or anyone willing to treat it.