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As soon this aired I contacted all news media on the fact that this was definately due to a childhood autoimmune disorder (either PANDAS or PITAND-a variant of PANDAS not due to strep. I forwarded on the name of Jamie's Psychiatrist, Dr Robert Reichler as he was the first one to understand this crippling disorder's affect on childhood OCD, tics, tourettes. He was the one who contacted the National Institute of Mental Health and Susan Swedo in 2001. Why is all of this attention going to Dr Nicolaides? What about all the research and knowledge received from Susan Swedo AND Judith Rapoport? Let's get to the founders on the research that has been done and give them credit. Thank you to Dr. Susan Swedo, Dr Judith Rapoport, and Dr Robert Reichler! You all contributed to our son Jamie's Recovery in 2001. It is your time to get the credit YOU deserve. Please to continue to research other triggers besides strep to these crippling autoimmune disorders. Marci Lichtenwalter Moondance to the Cure Facebook Marci Lichtenwalter http://www.jamiesstory.wordpress.com Twitter: DrKen1stPitch YouTube Jamie's Story

Vickie--I will add our d's experience (very positive results) with Amoxicillan. I wonder the same though, that if we had tried something stronger would her recovery had been quicker? --but no way of going back, and the GOOD news is that from an entirely debilitated child summer of 2008: with severe, regressive, sudden OCD--no talking, eyes shut, step-stepping, holding saliva in her mouth, holding painful positions, spitting at us, throwing things, toileting "accidents", we had to carry her, presented like a large naughty 4 year old (10 at the time)--for a horrid month at the worst of it, etc.etc. From THAT presentation to today where she is a gifted, happy, funny kid again, with good friends, emotionally connected and getting all A's, again, in school--(I think the emotional connectedness was most important to me.) I credit prayer that led us to a perceptive doctor--Our d had an excellent reaction to FULL strength Amoxicillan (and two steroid bursts along the way--which seemed to snap her out of it.) We have had three severe "episodes" where she had subsequent OCD/mild tics and Amoxicillan worked well. She has been on it continually now for the past 10 months. Our son, Jamie, was put on amoxicillin from the onset of PANDAS. It took a while for us to see improvement so I do not feel that any parent should expect dramatic results within 10 days. I would say within 45 days we did see improvement. We chose (with advice of our pediatrician) to keep him on amoxicillin for over a year. We did not use steroids as they can effect the emotional lability and this is something we did not want to take a chance on. It is important to mention that during this time we kept our son away from artificial sweeteners, colorings, vaccines, toxins, made sure he got plenty of rest, used meditation and chiropractic. Thank goodness, he has not had any exacerbations since his initial treatment in 2001. We do, however, use Amoxicillin as a prophylactic tool when he is exposed to an ill family member or becomes ill himself. The key to all PANDAS children, in my opinion, is to be proactive and seek out a holistic healthcare provider to keep your child's immune system at an optimal level. We do not have all the answers...but this is what we found to be true in our son, Jamie's case.

I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission. Marci Lichtenwalter Thank you for coming here to respond. I hope you were not offended by what I posted. I do appreciate what happened to Jamie and Sammy and the turmoil of their families in getting help. WONDERFUL that antibiotics made such a difference for both boys. The problem that many of us with PANDAS kids are having is that doctors very frequently believe that low ASO & AntiDnase titers rules out PANDAS, even in the face of positive strep cultures...and our children are denied treatment because of it. I'm so glad those high titers enabled you to get treatment for your child....but, while high titers are diagnostic for a prior strep infection, they are not diagnostic for PANDAS and that is where my angst comes from. -Peggy In my opinion, any physician that would deny a child treatment in the face of a positive strep culture is taking that child's life into their own hands and destroying it. These physicians must be held accountable for their irresponsibility and should not be in the healthcare profession. A physician MUST be willing to investigate all avenues. There is more and more information on the PANDAS frontier. WE NEED the medical community's support WE NEED one goal...TO ERADICATE PANDAS. Marci Lichtenwalter read more on www.jamiesstory.wordpress.com

I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission. Marci Lichtenwalter