I hope the making of my YouTube video has given parents hope for their child suffering from PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Strep). Since this time top Physicians throughout the United States have begun to become educated about these crippling childhood neuropsychiatric disorders set off by STREP. These conditions cause sudden onset of OCD and MOVEMENT DISORDERS such as TOURETTES & TICS. We learned this firsthand when our son, Jamie, developed these symptoms in 2001 several months after a strep illness.
Enough is Enough. I am saddened to hear there are many many children & families still suffering.
Through the work of Beth Alison Maloney and her book, Saving Sammy, we have begun to get the attention of the media. With the recent diagnosis of the “sneezing girl” (PANDAS) we have stepped into unchartered territory. My New Years Wish is that 2010 will bring our children safety, health and joy. Safety- meaning that our children will be safe in the hands of pediatricians who will know to recognize this disorder for what it is, an AUTOIMMUNE DISORDER. Health-meaning that the child’s physicians will all know how to effectively TEST for and TREAT this condition. A simple strep throat culture will not diagnose PANDAS. Blood levels must be tested for elevated strep titers. By treat I mean not only longterm antibiotics (if the condition is found to be strep related) but IVIG if non responding, as well as behavioral modification therapy by leading childhood ocd psychiatrists & psychologists and additional therapies by our holistic community. And finally, JOY, that we will bring to these children through my love of art and music, as they heal…And they will heal. These children’s cries will not be ignored.
Happy Holidays. It will be, indeed, a joyous NEW YEAR. (published December 7, 2009)
Marci Moondance to the Cure for PANDAS & PITAND
Twitter @Moondance2cure Moondance2cure@gmail.com
Pandasfoundation.org Northwest “got strep” Regional Coordinator including Canada, Hawaii, UK