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Hi all, I have spent hours reading your posts over the last few days and weeks. My 12 year old son is exhibiting all of the symptoms of PANDAS. He was officially diagnosed by a LLMD here in Northern Virginia six months ago, after MY LLMD reviewed his blood work for me, and caught his Strep titers at over 2800. The test was originally ordered by a pediatric psychiatrist two years ago, when he suddenly "flipped out" in the car one day, suddenly refused to leave my side, couldn't attend school, was walking on his toes and cried all the time. His solution at the time was heavy doses of SSRIs, which lead to threats of suicide. Our son begged us to take him to a hospital, where we were told we didn't want to admit our 12 year old to a psychiatric hospital. Luckily they got us into another Dr. who helped us wean him from the SSRIs and we saw some improvement. A couple of months later, we went on spring break and he couldn't get in the car to come home. I took him to a new LLMD and asked her to humor me and run the test again. His strep titers were again over 2000. We started a course of antibiotics , Minocycline (he is allergic to amoxicillin) and within two weeks he was better. Attending school, playing lacrosse and even cried because he said for the first time his knees and ankles didn't hurt. She stopped the abx after one month and he deteriorated. Second round we did not see drastic improvement, but looking back now, it wasn't awful. In May 2013 he couldn't attend school at all. He complained of "intrusive thoughts", stomach problems, couldn't handle the chaos in class or the halls, wouldn't ride in the car, would go through phases of "Is this safe to eat?", started doing weird repetitive motions with his hands, twitches all night long, doesn't sleep, complains of restless feelings....the list goes on and on. He has NEVER in his life tested positive for strep throat. He had perfect attendance in school, since kindergarten, until last year. This is day three of school here in Virginia and he has attended for a total of an hour. He says he can't do it. What do I do? Who do you recommend? I know you are all busy with your own issues, but I don't know where to turn to. His Dr. says she will do whatever I need her to do, but I don't know what that is. The psychiatrist we are seeing just keeps prescribing heavier drugs, which make him angry and violent and suicidal. This is a child who has never even raised his voice to me. He says that all of the "positive thinking", deep breathing, etc. from therapy don't work. I am at a loss. We were turned away from the study at NIH, because we didn't have a positive throat culture. Ever. Neurologist? ENT? Infectious disease? Storch clinic in FL? Wanted to add that I tested positive for the MTHFR gene and am now taking Deplin. I feel quite a bit better. The Psych did write him a prescription also, but I haven't seen any changes...its been two weeks. So..Minocycline x2 a day Probiotics Prozac 20mg Deplin My son was a smart, athletic, popular, happy and very social kid. We just want HIM back. I will be incredibly grateful if you share your knowledge and suggestions and will in turn support others. With gratitude , Karina