Kaye

Thanks so much for the info. I will look up the Pandas Physician Network. I will talk to the dr about trying antibiotics again. Our dr was hesitant to prescribe them since his throat culture was negative. I had no idea the Cunningham test was so expensive...I'm assuming insurance won't cover it? Still might be worth it though. Yes they had mentioned restless leg syndrome when we first went to the neurologist four years ago, though no definite diagnosis. I wonder what the difference between that and chorea is, and if the dr would have been able to diagnosis it then?

Thanks that's good to know. Yes I wondered about that. Seems like the infectious dr had already made up his mind before he we even saw him.We'll check into seeing an immunologist also.

Thanks for input, we really appreciate the advice. I will ask for another aso test. I will also talk to the neurologist about the anti d-nase b test and the Cunningham test. Hopefully we can get some answers from the neurologist. My ds is 12 and our pediatrician was concerned about his aso levels being high. That's why we were surprised that the infectious dr didn't think it was a concern.

This is my first post here. I've been researching pandas the last few months and I'm convinced this is what my son has. He first got sick almost four years ago with the worst case of strep he had ever had. Fever, throwing up, sore throat. We got antibiotics and he got better. About a week later he started twitching at night when he would lay down and try to sleep, he also had insomnia, sometimes only sleeping an hour or two a night. He also started stuttering, something he had never done before. We went to our dr, a neurologist, and a pulmonary sleep dr. All the tests came back fine with the exception of the sleep study which only said he had a sleep disturbance but they didn't know why. Finally went to an holistic dr who suggested we go gluten and dairy free,also eggs. That helped some and we also started taking melatonin and gaba. Ds felt better for a while then started getting brain fog and anxiety. Still has insomnia and some twitching. Stuttering got better soon after changing our diet. So he would have good days and bad days sometimes havibg flare ups for a few weeks. This past summmer brain fog and anxiety got much worse. Also his pupils are often dilated. There are times when he has shivering and yawning episodes. Where he starts shivering and yawning and can't stop. Drs don't seem to think its not a big deal but I know something isn't right. We are taking fish oil, magnesium, melatonin, fish oil, oil of oregano, olive leaf extract, ibuprofen. He's started tapping his hands lately. He can't tolerate loud noise or bright lights. He's very emotional and can't stand it when our routine is changed. He's also concerned about time going by to quick and always wants to know what time it is. Went to our dr, she seemed willing to listen and consider pandas. Did cultured strep test which was negative. She also did some blood work and that showed an aso titer of 400. She referred us to an infectious dr who said he didn't think it was pandas. He said an aso test also tests other strep strains which aren't harmful and that could be why it was elevated. He also thought it could be a movement disorder and is referring us to a neurologist. I guess my question is does that sound right with the aso test. I thought 400 was high. We are open to any ideas or suggestions about how to proceed from here.