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  1. This came to my inbox from Beth Maloney, author of Saving Sammy and advocate for PANDAS families. I am posting it here with her permission: Hello there, It rained here for most of Memorial Day Weekend. Just as I cozily sat down to write a warm & fuzzy email about Sammy's graduation including a big thank you for all the cards (still coming in), the phone rang. It was Marianne Fox calling, the mother of Grant Acord. He had just been arrested in connection with the high school bombing plot in Oregon. Marianne and I had been in touch since the fall of 2011, and she gave me permission to share this information. Marianne contacted me in 2011 because a few months earlier Grant had been diagnosed with PANDAS by Providence Medical Center in Portland OR. He had extreme OCD, anxiety, and depression, and she'd been unable to find a physician who knew what to do. His strep titer was 950. I gave her as much direction as possible, and she began her search. She stayed in touch over time, never successfully finding a physician who would stick with long term antibiotics in significant doses. Grant was, however, loaded up on psychotropic medication of course. Marianne's most recent idea was to switch insurance companies to a carrier that would cover IV Ig. At that point, she hoped to avoid the antibiotic fight. She did not have the opportunity to follow through on that idea because Grant was arrested. Thank God police received a tip and averted a disaster. I've done a couple of interviews since then. Everything one says doesn't end up in an interview, and the interviewee has no control over the edits. But I want you to know that they've all asked, "were you surprised." My answer was always, "no, but not specifically about Grant." I remember watching the Newtown coverage and wondering whether the shooter might have had a brain infection, and I knew it was unlikely that anyone had bothered to check. I've wondered because I know your stories. I’ve read about your children who've become violent, punched holes in walls, attempted suicide, pulled knives on family members, and jumped from moving cars. I carry those thousands of stories with me everyday, and it was inevitable that one day I'd get the call. PANDAS isn't an excuse for Grant's behavior; it's a factor in his behavior. It's why when the push to pay attention to mental health came after Newtown that I reached out for the Obamas and the Bidens. Shying away from how serious PANDAS can become is, I believe, is a mistake. I know some parents disagree with me. They are distraught that PANDAS has been linked to the possibility of such a horrible event. I have the opposite opinion. Perhaps THIS is what it takes to get elements of medical community off their high horse of hubris and to begin acting like grown-ups. I am sick to death of the ridiculous and illogical position taken by so many who are uneducated in the field and yet make pronouncements as if they are experts. I am tired of reading that PANDAS is "rare," "uncommon," and "controversial." When I read a doctor say, “I’ve never seen a case,” I think “because you’ve never looked for one.” And when I read that there's "no science" to back it up, I wonder how they could have missed the hundreds of evidence based studies. I’m disgusted by the way parents are treated by hospitals who accuse them of “doctor shopping,” “Munchausens by Proxy,” and try to steal their kids. Thomas Insel MD, the director of the NIMH, expressed my frustration more gently in his blog of March 26, 2012. He traced the history of neuro-syphilis back to 1912 and wrote, "The idea that mental or behavioral disorders could be due to infection is, therefore, not new but it remains surprisingly difficult to accept." Dr. Insel is in a position that demands he be politic in his comments; I am not. I bluntly believe the attempts to cause children with PANDAS to go untreated constitute medical child abuse. I know you are not all facebookers, but I truly think you should take a look at my fan pages especially when PANDAS is associated with a national event. I don’t always have time to keep you up to date. The pages are always full of all the recent interviews, articles, and opinions. You do not need to join facebook to do this - just go to the LINKS page on savingsammy.net and click. For an excellent recent article about PANDAS please see The Walrus, a highly respected magazine in Canada. Here is the link...be certain to read the postscript. http://thewalrus.ca/a-feverish-debate/ On a lighter note, as promised, here is a photo of the world's most famous PANDAS success story...What does a young man do when he is twenty-three years old, has already helped to change medicine and impacted countless lives? When he has thousands grateful for his very existence, and has graduated from the computer science school at Carnegie Mellon University? He launches a start up! Keep you fingers crossed for Sammy's success. He so deserves it.
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