Parents and Pediatric Experts Convene to Spotlight Latest PANDAS/PANS Research

Wednesday, September 18, 2019 General News
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October 6 conference to offer parents hope, coping skills. Physicians will gather the day before to discuss and evaluate a variety of treatments.

WASHINGTON, Sept. 18, 2019 /PRNewswire-PRWeb/ -- Hundreds of parents will gather October 6, 2019,

at the Crystal Gateway Marriott in Arlington, Virginia, anxious to learn the latest advancements in treating an affliction that has come to rule their families' lives: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) — now referred to as basal Ganglia autoimmune encephalitis (AE).

Imagine your child's behavior suddenly going off-the-charts wild just a few years into his otherwise calm life. After arduous and repeated journeys through the health-care system to find out what's wrong, often with many misdiagnoses along the way, doctors tell you the verdict: PANDAS/PANS-AE, which results in neurological symptoms that mimic mental illness and may affect 1 in every 200 children in the U.S.

Children and young adults with PANDAS/PANS struggle with crippling OCD, tics, inability to eat and in some cases periods of intense seizure-like rage and breaks from reality. Treatment can quickly strain a family's finances, since insurance has been slow to cover the syndrome.

The Lancet Journal Sept 10 2019 has reported a new virulent strep strain M1 UK that is nine times more virulent than current serotype M1 strep. This will be addressed and possible implications in Europe and US populations.

Ten of the world's foremost experts on PANDAS/PANS will speak during the day-long patient portion of the conference. At the hotel the evening prior to the event, meditation led by Tibetan Sound Bath Experts will be held at the Marriott followed by tea, art and community dialogue. This is to allow parents a moment to manage their stress and balance their thoughts, feelings and emotions.

The gathering of parents will be preceded by a physicians-only event on Saturday, October 5, 8:00 a.m.5:00 p.m., at The Mayflower Hotel in Washington, D.C. The symposium — 2019 Autoimmune Encephalitis Post Streptococcal Evaluation & Treatment – A Way Forward — will particularly attract specialists in otolaryngology, pediatrics, psychology, immunology, neurology and rheumatology.

The symposium will help allied health professionals identify the signs and symptoms of PANDAS/PANS and the level of severity based on established scales and guidelines. Participants will discuss the conventional treatment guidelines as well as new medication currently used and studied; evaluate novel approaches of treatment; and evaluate animal data and the mechanism of disease explored through cytokine studies, tonsil culture analyses, and deep brain stimulation.

About PANDAS Network PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS. To learn more or donate, visit http://www.pandasnetwork.org.

 

SOURCE PANDAS



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