Controversial Childhood Illness PANDAS the Focus of a Special Medical Journal Issue

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A joint statement of more than 30 researchers and physicians is a “watershed moment” for this syndrome that affects 1 in 200 children in the United States.

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Early detection and treatment of PANDAS is key. A child who is treated early can have a complete remission. Our hope is that this issue of JCAP will raise awareness so more physicians will be able to recognize PANDAS symptoms and intervene right away.

The Journal of Child and Adolescent Psychopharmacology (JCAP) last week released a special issue devoted entirely to scientific studies of experts in the field of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci) and PANS (Pediatric Acute-onset Neuropsychiatric Syndromes), an autoimmune reaction triggered by infections such as strep throat, walking pneumonia, viruses and Lyme disease, which result in inflammation of the child's brain. This inflammation causes a sudden, dramatic onset of obsessive compulsive disorder, or severely restrictive food intake, together with severe anxiety, depression, tics, neurological conditions, sleep disturbances, and a host of other psychiatric behaviors. The children afflicted with this are largely ignored by physicians. Without early diagnosis and treatment, it can lead to lifelong mental and physical disabilities. The syndrome affects roughly 1 in every 200 children in the United States but, until now, has been a controversial diagnosis in the medical field. With this special issue of JCAP, which includes a consensus statement from a consortium of more than 30 physicians and researchers, the broader medical community will have the tools to better understand, diagnose and treat the syndrome.

This consensus statement, along with other newly published research papers, provide “a watershed moment in our thinking about PANS,” according to Harold S. Koplewicz, M.D., editor-in-chief of JCAP and president of the Child Mind Institute in New York. “For too long, confusion and a lack of understanding concerning this syndrome have left severely impaired children with few, if any, treatment options. This effort promises an improvement in the quality of care.”

In 2014, the American Society for Apheresis endorsed the use of plasmapheresis, “a blood cleaning treatment,” as first line treatment for PANDAS. Pheresis is used in invasive blood diseases like sickle cell anemia, encephalitis and more.

“We’re grateful that the scientific research related to PANDAS and PANS is finally getting proper exposure,” said Diana Pohlman, executive director of PANDAS Network, a network for parents of children who suffer from the syndrome. “Early detection and treatment of PANDAS is key. A child who is treated early can have a complete remission. Our hope is that this issue of JCAP will raise awareness so more physicians will be able to recognize PANDAS symptoms and intervene right away.”

In conjunction with the release of this issue of JCAP, the Warren Alpert Medical School of Brown University is hosting the PANS, PANDAS, and Acute-Onset Neuropsychiatric Syndromes conference on March 14-15 in Rhode Island. It is an “evidenced-based educational activity aimed at those who provide care to children and adolescents to bring them up to date on the research, diagnosis and treatment of such children and to dispel the myths around the disorder.”

Dr. Louise Kiessling, one the first researchers of PANDAS, is hosting the event, which includes talks by many of the JCAP authors, leading providers and researchers. To register, please visit: https://apps.biomed.brown.edu/cme_registration/.

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. It is run by parents who have treated and healed their children of this illness and who wish to erase the social stigma and fear surrounding an illness that is largely—preventable. For more information, visit: http://pandasnetwork.org/

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Kathy Silverstein
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