PhotoA researcher at the National Institute of Health is proposing new criteria for a broadened syndrome of acute onset obsessive compulsive disorder (OCD) in children. 

The syndrome describes children and teens who suddenly develop on-again/off-again OCD symptoms or abnormal eating behaviors, along with other psychiatric symptoms — without any known cause. In a world where everything must have a formal name and an acronym, the syndrome is known officially as Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

Some instances of the syndrome can be traced to an autoimmune process triggered by a strep infection. A clinical trial testing an immune-based treatment is currently underway.

Ferocious onset

"Parents will describe children with PANS as overcome by a 'ferocious' onset of obsessive thoughts, compulsive rituals and overwhelming fears," said Susan Swedo, M.D., of the NIH’s National Institute of Mental Health (NIMH), who first described the syndrome two decades ago. 

Swedo and other researchers propose working criteria for the syndrome in the open source journal Pediatrics & Therapeutics.

"As the field moves toward agreement on this broadened syndrome, affected youth will be more likely to receive appropriate care, regardless of whether they are seen by a neurologist, pediatrician or child psychiatrist," said NIMH Director Thomas R. Insel, M.D.

Clinicians reported that evaluations of more than 400 youth diagnosed with the problem confirmed that affected boys outnumbered girls 2-1, with psychiatric symptoms, always including OCD, usually beginning before 8 years.

Fine points

Although debate continues about the fine points, the field is now of one mind on the core concept of "acute and dramatic" onset of a constellation of psychiatric symptoms. There is also broad agreement on the need for a "centralized registry" that will enable the research community to analyze evidence from studies that will eventually pinpoint causes and treatments.

The syndrome will "likely turn out to include a number of related disorders with different causes that share a common presentation," explained Swedo.

Among the wide range of accompanying symptoms, children may appear terror stricken or suffer extreme separation anxiety, shift from laughter to tears for no apparent reason, or regress to temper tantrums, baby talk or bedwetting. In some cases, their handwriting and other fine motor skills worsen dramatically. Leckman's team at the Yale Child Study Center is in the process of developing assessment tools for diagnosing the syndrome.

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