marknla

Your so welcome, I dont know if that was a half dose or full. After we returned my daughter continued treatment with her pediatrician who consulted with the doctors at NIH. I spoke with them often. They sent the paper/study to me when it was finished. I will always be indebted to them.

Dear T.Mom I dont recall amoxicillin. They sent me home with a big bottle of PenV (sp?) after her course of Biaxin she started on the penV. 2X a day I think it was 250 mgs.

I just remembered something at NIH during a scan of her brain ( dont remember what kind) they seen a very deep sinus infection that they considered to one of the reasons for her not responding to a regular 10 day course of antibiotics for strep. I remember them telling me strep could hide there and continue to cause her neuro symptoms. It was so far up in her sinuses it look to me as if it was up in her brain. THATS when they put her on Biaxin for like 15 or 20 days. Thats when she got significantly better. I havnt heard a vocal or seen anything since she was around 16. .My daughter was on antibiotics for close to two years. She stopped around ten. I tried to never miss a dose. If she became sick I immediately had her tested for strep and treated with stronger antibiotics. They used Biaxin (Sp?)alot for her treatment. Im sorry if I am not so well informed on the newer antibiotics and probiotics. After reading many of your posts I was right there with all of you mentally and emotionally to the place you are now. I even had to call my daughter today and check in to make sure she was ok. She asked for more money ! Is that a tic? ... Kidding aside...I know how fragile this recovery can be. But I tell you all this, if Pandas does rear its head again back into my daughters life, this time around because of this forum I wouldnt have to do it alone and that makes me little less afraid. I cried too when I read all of your posts, you are all me back then. I can identify with every single one of you. Also, Thank you so much for your offers of getting me in contact with those other NIMH childrens parents. I would be so happy to speak with them. Being at NIMH was a very eyeopening experience for me. I learn alot in the short time there. Sf mom - She was on it for two years straight stopped around ten. We considered having her tonsils removed before going to the study. I asked the doctors at NIMH if we should. I believe they said at that time there was no conclusive evidence that would help. I would have opted for the surgery but I was afraid things could have gotten worse. I didnt want to rock the boat after we came back because she was better.

What a warm welcome.... thank-you! My daughter did not receive the other treatments plasmapheresis or IVIG because she had a active strep infection while we were at NIMH. I had no idea she actually had strep when we arrived at the study. Her Clinician was DR. Pearlmutter (sp?) we had to first treat the strep with a ten day course of Antibiotics. Then she went on penv for a long time. When she would get any cold/flu some tics would break-thru short lived and not horrible. One time she actually got strep on the penv it all came back full blown but subsided more quickly then before and we just changed her antibiotics to treat . I wanted her pediatrician to fully understand the need to be agressive with antibiotics... also I remember intuitively "knowing" when others around her had strep by my daughters behavior. It was a long road for us but once diagnosed it was much much easier. I remember her last dose of PenV.. my fear was so great that it would all return. It never really did return. Heres my opinion, I am not a doctor, but I feel very strongly that every exacerbation of Pandas does some damage.. and I would have done anything to keep her from another outbreak during those formative years. I remember watching her from afar and thinking how long can she stand all of this ? My heart was breaking for her. I thank god for the first doctor that associated the two. If not my daughters brain would have been repeatedly assaulted by her own immune system. From a kid who distrupted the class with vocals, would walk and play the piano, spit and not even realized she was spitting, did repeated motor tics, had a hard time writing and reading (139 IQ ). I knew my daughter was awake in the morning when I heard her cough, it was the first thing she did in the morning and the last thing before she would sleep. I dont have to go on.... I havent thought about this stuff in years. But the feelings come back easily. Trust your instincts with your children, you are their only advocate. My daughter is 18 , gorgeous, smart, athletic, in college and doesnt even really remember that time in her life. This is truly beyond my dreams. She does spend my money like its water ..lol Pmom - It would be terrific if you could find Janice's website. Thanks and blessings to all of you and your children

Hi everyone, I cant stop reading this forum. You all are very lucky to have each other. My daughter was one of the 50 children in the original case study at NIMH. My daughters first tic was blinking at 3 years old. I brought her to her pediatrician ( thought her eyes might be irritated ). I remebmer the Dr. mentioning to me that "weren't you just here last week for strep"? I said yes and went on to talk about her eyes blinking. The next 4 years were like a bad dream. My daughter would be completely tic free for 4-7 mnths and then wake up with a explosion of throat clearing grunts, at its worse it was more like a bark. Facial tics ,grimaces, and odd movements. Even her personality changed and when she had it, she couldnt write. There was so much going on with her I would have to keep a journal. It always started after a bout of strep. After each episode the tics were stronger and lasted longer. We went to ents, psyciatrists, allergists. EVERYONE thought I was nuts when I question if Strep and tourettes were somehow linked. There were times I would start to think I was crazy too. Then one day we would wake up and the problem was gone. This patterned repeated over and over again ... One late night after a psychiatrist earlier that day diagnosed her with Tourettes. I did a search online for strep and tourettes. I found Dr Swedo NIMH Pandas study... I cried when I read about the research project. . Everything fit my daughter to a T. I left a message that night, A doctor called me back the next day. We spoke at length and they decided to fly us to Maryland. I cant tell you what it meant to have someone validate my perceptin on what was happening to my daughter. My daughter went thru a battery of tests. She was constantly having tics and movements while there her behavior was really deteriating. Not only was her titer elevated but she had strep as well! Needless to say she was put on a heavy dose of antibiotics. Tics started to subside within 1 day. After completion of those antibiotics, she went on and stayed on a low dose of antibiotic prophylactically . I think she was on it for a year. Maybe more. I am not a big fan of over using antibiotics but this condition warrented it. We have had some episodes of strep after that and the tics come back but she goes on her antibiotics swiftly. At 15 she kinda grew out of strep and by 18 the tourettes is a distant memory... She is at college, pre-pharmacy ,has a boyfriend job. I was hoping to possibly get to talk with others from that study. God bless LA