Parents whose children are diagnosed with PANDAS, an autoimmune disease that attracted widespread media attention because of its effect on girls in Leroy, NY earlier this year, will gather at a special education and networking event on April 28 in Burlingame, CA.
Online PR News – 16-April-2012 – San Francisco, CA – BURLINGAME, CA – Health care professionals and parents from around the world will gather on April 28, 2012 to learn more about the newly diagnosed disease called PANDAS and how they can advocate for better care for children affected by this disorder.
Although previously thought to be rare, PANDAS is now being considered as the possible cause of neurological symptoms in thousands of children nationwide. Many physicians know little or nothing about PANDAS, so they treat children unsuccessfully for their symptoms and don’t eliminate the cause of the disorder. As a result, many children are misdiagnosed, and some end up being institutionalized for mental and emotional behaviors.
Dr. Rosario Trifiletti, a child neurologist from New Jersey, believes PANDAS is to blame for strange tic-like symptoms exhibited by 18 girls in LeRoy, NY earlier this year. The students recently attracted national media attention for their uncontrollable shakes and outburst. Trifiletti rejected the original diagnosis of hysterical conversion disorder and focused on PANDAS. Since then, five of the girls have been successfully treated with doses of special antibiotics, and more are showing signs of improvement.
PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. The condition sometimes affects children who contract strep (or other powerful bacteria such as mycoplasma or lyme), producing uncontrollable tics that result from an autoimmune reaction when the person’s antibodies mistake its own brain cells for strep bacteria.
The exact number of PANDAS sufferers isn’t known, since the disease was only discovered in 1998 and is just now receiving attention by the medical community, including the National Institute of Mental Health.
Most parents have found little or no help from the medical community at large. Few health care providers and very few insurance companies offer assistance for families of PANDAS children, and parents are largely left to research their options and pay for care on their own. With single immunoglobulin treatments costing up to $15,000 apiece, many families facing this ordeal have experienced severe emotional and financial difficulties.
The April 28 symposium is only the second national gathering of parents of PANDAS children, and the first where care providers will be briefing parents. It has attracted attendees from as far away as Australia and London.
Because of the challenges parents face in getting support and care for their children, the symposium will focus on diagnosis and treatment options, current PANDAS research and how to effectively advocate on the issue in schools. The event is being organized by a group of parents whose children suffer from the disease in partnership with PandasNetwork and Hill Park Medical Center in Petaluma, CA, an integrative medical practice in the Pacific Northwest offering specialized care and treatment for PANDAS children. Event organizer Amy Smith, NP coordinates the PANDAS Treatment Program at Hill Park and is the mother of a PANDAS child.
Presenters at the symposium include Diana and Don Pohlman, founders of PandasNetwork and parents of a child with PANDAS; Dr. Sunjya Schweig MD, an integrative family practice physician at Hill Park Medical Center and PANDAS specialist; Dr. Dritan Agalliu PhD from UC Irvine, presenting groundbreaking research on the blood brain barrier; Dr. Margo Thienemann, a Pediatric Neuropsychiatrist from Palo Alto that has worked extensively with PANDAS children and families; Dr. Jamie Candelaria-Greene, PhD and educator that will help families address the special needs that PANDAS children have within the school system; and Amy Smith, NP who has been organizing advocacy efforts in support of PANDAS children within the medical community.
The event will take place at the Embassy Suites Hotel in Burlingame, CA from 10:00 – 5:00 p.m. Registration is $55 in advance, and seats and sponsorships are still available