A Boy, His Brain, and a Decades-Long Medical Controversy

Timothy was 10 years old when his personality changed overnight. A concussion during a family ski trip in December 2016 left him unsteady on his feet, but that was just the first sign something was wrong. The strawberry-blond boy who played on the chess team and looked forward to Mandarin lessons became withdrawn, obsessive, and suicidal. Back home in Marin County, California, he said “bad men” had surrounded his family’s house and were trying to get him. Timothy’s parents, Rita and John, took him out of school while doctors tried to decipher what was going on inside his head. (The family members’ names have been changed to protect their privacy.) Rita suggested that her son take up knitting to fill the time. Once he started, he couldn’t stop. Compulsive thoughts haunted him, and he refused to wear many of his clothes, fearing they were contaminated.
The boy’s doctors were stumped. Concussions can cause mood changes, but not like this. They ran test after test, searching for a diagnosis. When Timothy’s parents wrestled him into the car to take him to various clinics—for brain scans, blood draws, immunological workups—he told them he wanted to jump out onto the highway. “You’re not my mom,” he yelled at Rita. In March, he started leaving the house and running barefoot through the surrounding fields. His parents placed a go bag near each door with bottles of water and a walkie-talkie. When Timothy ran, his father would slip on sneakers, grab a bag, and run alongside him until he tired. Eventually, the couple hired a military veteran to keep an eye on their son day and night.
The tests kept coming back normal. Neurologists referred him to psychiatrists. Psychiatrists referred him back to neurologists. Pediatricians recommended therapists. Therapists suggested psychologists. In late March, with Timothy in a deepening depression, his parents and uncle made a plan: They would rent a car with no back doors, sedate him with Benadryl, and drive him overnight to the child psychiatric unit at UCLA.Timothy stayed there for more than three weeks. The doctors prescribed Lexapro, an antidepressant, and steadily upped the dose. But the boy only became more agitated. It was as if an alien had crept into his body and stolen the real Timothy, Rita recalls. His intrusive thoughts suggested a diagnosis of obsessive-compulsive disorder; his mood changes pointed to a depressive disorder. Rita says one psychiatrist told her, “To be honest, he doesn’t really fit any category we have.”
While Timothy was undergoing treatment at UCLA, Rita spoke with a mom in the San Francisco Bay Area who worked with a support group for athletes who suffer concussion and brain injury. She told Rita that when a child’s concussion symptoms don’t go away, it’s sometimes because there is an underlying infection that disrupts the brain. Rita searched online and found a diagnosis that seemed to describe the full range of her son’s symptoms: pediatric acute-onset neuropsychiatric syndrome, or PANS. One possible trigger of the disease, she read, is infection with Streptococcus, the bacteria that cause strep throat.
Rita thought back to the winter. She couldn’t remember Timothy coming down with a sore throat, but just before the ski trip she had noticed that the skin around his anus looked a little red. She had put it down to irritation. But strep, she read, can cause rashes like that. She asked a neurologist at UCLA whether PANS might be making her son sick. The reply shocked her. “That’s a made-up disease,” she recalls the doctor saying. According to Rita, the UCLA team wanted to keep Timothy in the hospital and continue giving him antidepressants. She and John had watched their son become less and less like the boy they knew. They made a plan to get him home.