A Curious Cause
PANDAS was first identified in 1998 by investigators at the National Institute of Mental Health (NIMH), including pediatrician Susan Swedo, M.D., now chief of the pediatrics and developmental neuroscience branch. In the 1980s, Dr. Swedo was among those studying a neurological disease called Sydenham's chorea (SC), marked by involuntary jerky movements, that occurs in up to 20 to 30 percent of children who have acute rheumatic fever, a rare illness caused by a strep infection. When the NIMH investigators began studying children who had severe, sudden-onset OCD, without the jerking movements found in SC, they discovered that many of the kids had recently had a strep infection. If strep was known to cause one neurological illness, researchers reasoned, it might cause another.
How does PANDAS take hold? It happens something like this: A bacterial infection such as strep triggers the immune system to produce antibodies. But instead of attacking the infection, they go after the basal ganglia, the part of the brain that controls emotions, behaviors, and physical movements. And the result is OCD-like behaviors and/or tics. "One distinguishing feature of PANDAS is the abrupt onset of symptoms," says Dr. Swedo, one of the country's leading researchers focusing on the syndrome. "Typically, OCD develops over years or months, but in PANDAS the symptoms literally begin overnight. One parent said, 'It's like my child was possessed.'" While there's no test to detect PANDAS, research published in February in the Journal of Pediatrics found that, compared with kids who have typical OCD, those diagnosed with PANDAS were more likely to have biological evidence of a recent strep infection, a sudden onset of psychiatric symptoms, and an easing of those symptoms while taking antibiotics.
That was Diana Pohlman's experience. Founder of the parent-volunteer resource and support group pandasnetwork.org, Pohlman says her typically developing son had what she calls a "sudden, catastrophic" onset of OCD symptoms that began on his first day of second grade in Northern California. "After school, he collapsed on the sidewalk outside our home and wouldn't move," says Pohlman. "When I got him through our front door, he crashed to the floor." He screamed that the electronics in their house needed to be shut off or their radiation would kill him. He had terrible separation anxiety at bedtime, needing to say "I love you" 20 times or more. While he kept his emotions in check at school, the moment he walked in the house he'd burst from anxiety and rage, and follow with tearful apologies. This led doctors to suspect problems at home, despite neurological symptoms like a loss of coordination and cognitive lapses.
Helping her son became a massive endeavor. "We lost everything," says Pohlman, who quit her job and sold their home to pay for treatments that tallied six figures. But in the end, the struggle to get him help -- which culminated in flights to a PANDAS specialist in Chicago -- was worth it: Today he's a happy sixth-grader with no traces of OCD.