A National Institutes of Health scientist has identified a new syndrome that affects children and teens who suddenly develop obsessive compulsive disorder (OCD) symptoms without any known cause.
Susan Swedo, M.D., of the NIH’s National Institute of Mental Health (NIMH), calls the syndrome Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). It expands on Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS), which is limited to cases that are tied to an autoimmune process triggered by a strep infection.
“Parents will describe children with PANS as overcome by a ‘ferocious’ onset of obsessive thoughts, compulsive rituals and overwhelming fears,” said Swedo, who first characterized PANDAS two decades ago. “Clinicians should consider PANS when children or adolescents present with such acute-onset of OCD or eating restrictions in the absence of a clear link to strep.”
“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.
The PANS criteria grew out of a PANDAS workshop convened at NIH in July 2010, by the NIMH Pediatric and Developmental Neuroscience Branch, which Swedo heads. It brought together a broad range of researchers, clinicians and advocates. The participants considered all cases of acute-onset OCD, regardless of potential cause.
Evaluations of more than 400 youth diagnosed with PANDAS showed that affected boys outnumbered girls 2:1, with psychiatric symptoms, always including OCD, usually beginning before 8 years.
Since a diagnosis of PANS implies no specific cause, clinicians will have to evaluate and treat each affected youth on a case-by-case basis, Swedo said.
The researchers propose that a patient must meet three diagnostic criteria for a diagnosis of PANS:
- Abrupt, dramatic onset of OCD or anorexia;
- The presence of at least two additional neuropsychiatric symptoms with similarly severe and acute onset, such as anxiety, mood swings and depression, aggression, developmental regression, or sudden deterioration in school performance or learning abilities;
- And that the symptoms cannot be explained by a known neurologic or medical disorder.
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, the researchers report. In some cases, their handwriting and other fine motor skills worsen dramatically, they add.
Leckman’s team at the Yale Child Study Center is in the process of developing assessment tools for diagnosing the syndrome.
Swedo and her colleagues proposed the working criteria for PANS in the February issues of Pediatrics & Therapeutics.