FW: The Boston Globe - 10/28/12

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From: Beth Maloney Sent: Saturday, October 27, 2012 5:41 PMTo: Beth MaloneySubject: The Boston Globe - 10/28/12 My friends, When Bostonians open their newspapers and turn to The Boston Globe's Sunday Magazine on 10/28 (circulation 365,000), they will find an investigative piece titled: The PANDAS puzzle: Can a common infection cause OCD in kids? A medical mystery that has families in crises. " As you read through the article (the link is below) you will find (about 2/3rds of the way through) that I represent two families who have encountered a pattern at Boston Children's Hospital that reads like something from the dark ages. The understandable reaction many will have is to think " there must be more to this story. " Readers will wonder if the families involved are derelicts, child abusers, or some other form of irrational human beings; that reaction is understandable. When accusations are leveled by an institution such as Boston Children's Hospital, the assumption is that it's a legitimate charge. I'm here to tell you - point blank - that is not true in either of these situations. These parents (my clients) are kind, diligent, caring moms and dads, who have consistently tried to do their best for their children. What they have encountered is medical bigotry in its ugliest and most extreme form. My concern is that you must not let this story stop you from taking the appropriate steps for your desperately sick children. If you do, not only do your children remain ill, but the bullies win. Screen your providers carefully and continue to follow the advice of doctors whom you know and trust. Stick to those you can find in the pull down menu of Providers under Other Resources at savingsammy.net. Visit the good doctors who are mentioned in your support groups. And soon we will have a list of hospitals for you, too; those which are friendly to PANDAS/PANS children. Then, if you need emergency services, you will be able to turn to a place that will support you, not one that will undermine your efforts. In that regard, I ask for your help. If you've had a supportive experience with a hospital, please send the information directly to Kathy who coordinates our national support groups. She is assembling the list. Her email is ksar@.... In the meantime, below is the link to the article. Email the reporter, Neil Swidey, to offer your support at NSwidey@... You may need to pay 99¢ for a four week online subscription (not sure), but that will enable you to read the piece as well as post online comments. I encourage you to do both. Boston Children's Hospital continues to insist - as you'll read - that it treats PANDAS/PANS. It makes this statement despite weeks of persistent online inquiries by parents. In response thereto, it has failed to name a single PANDAS/PANS doctor at the hospital, much less a PANDAS/PANS patient who has been treated and/or recovered at BCH. And only blanks turn up when searching its website for either disorder. The story of The Emperor's New Clothes is what comes to my mind...and how prophetic that a child spoke the truth. It took twenty years for the greater medical community to accept that a bacteria (h-pylori) causes stomach ulcers. We've only been at this for three years. In the greater scheme of medical history, we are moving at lightening speed. I know it isn't fast enough for your precious darlings, and my heart bleeds for each of them and you. Those who thwart our effort, who insist that children should remain horribly ill to satisfy their own arrogance, sadly underestimate our strength as a group, and the eventual outcome of this challenge. Please share this link with everyone you know. Stay empowered, Beth http://bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html