January-February 2016 | Featured Article

The Mystery of PANDAS

Psychological disorder, associated with strep infections, turns children's lives upside down

share this

Within three weeks, the girl she once was had vanished. “She fell down the rabbit hole of OCD,” Peggy says. In an attempt to keep Jennifer’s life as normal as possible, Peggy took her to Hadley’s Playground in Potomac, where they often went to play. As she carried Jennifer out of the car, the little girl’s legs dragged behind her. Peggy sat and watched as other mothers played with their children. A few weeks earlier, she was one of them; now her daughter lay in front of her, clutching the ground. What in the world has happened, she thought.  

Jennifer’s pediatrician recommended a psychiatrist. The psychiatrist recommended a neurologist. The neurologist suspected a brain inflammation might be the cause of her sudden onset of OCD. When an MRI showed a sinus infection, the neurologist prescribed a steroid burst, and—at the insistence of Jennifer’s father—the pediatrician ordered a round of antibiotics. Jennifer's father had read about PANDAS and thought antibiotics might help his daughter. He wasn’t sure if she’d ever had strep, but he knew she had been around kids who did. Jennifer’s doctors had heard of PANDAS, but told her they hadn’t treated it. The neurologist was open to it, Peggy says. But the pediatrician was skeptical.

“You have to ask yourself: Why don’t they believe it exists?” Peggy says. “Just because it hasn’t been in their experience? [To] those who have lived it, it’s mind-boggling that doctors would not be willing to treat it.”

For four weeks during the summer, Jennifer barely spoke a word. Then, 10 days after starting the steroids and antibiotics, she suddenly began prattling on about an episode of That’s So Raven, like nothing was wrong. By the time school started, she was well enough to go, but she had to bring extra clothes in case she wet herself. A teacher kept a watchful eye on her as she methodically rearranged books or repeatedly slid her coat on and off.

The following school year, Jennifer was OCD-free, but the symptoms seemed to return briefly whenever she was exposed to someone with strep. The next year, PANDAS came back. She suffered from intrusive thoughts and anorexia until IVIG treatments, plasmapheresis and getting past puberty appeared to do away with the PANDAS for good.
Today, as Jennifer gobbles down a sandwich and chips at Panera Bread, that time seems like forever ago. She’s a cheerleader, runner and top student who’s focused on college plans for next year. “The years now, since I’ve gotten out of it,” she says, “I kind of look back and say, ‘Wow, I’m so amazed by how happy I am and how great my life is.’ ”

The fight with PANDAS seems like ancient history to Melanie, too. At 16, Melanie (not her real name) is busy with classes at her magnet school. As she sits down at the grand piano in her living room, she pulls back her long blond hair. Then she touches the keys and evokes a gentle melody. She likes to compose her own music, but this time she’s playing a classical piece, “The Angel” by Sergei Bortkiewicz. She used to know it by heart, she says, but now her fingers fumble sometimes as they try to remember where to go.  

“It’s always been a favorite of mine,” Melanie says. “It’s very sweet and pleasant. It’s beautiful.”

Melanie was in sixth grade when she developed PANDAS. The straight-A student loved piano, enjoyed Girl Scouts and had lots of friends. She also had lots of strep—she got it 14 times, by her mother’s count. In an instant, Melanie became afraid of the world and herself. She confessed any wrongdoings she could think of to her mother, and she worried about what she might do to herself. It’s not that she was suicidal, she says. She wanted to live, but feared that whatever had taken over her mind would make her harm herself, or someone else. “One second you’re like a completely normal kid,” Melanie says. “The next second, you’re, like, terrified of everything.”

She found herself in front of pediatricians, psychiatrists, psychologists and emergency room doctors. Her mother was on the phone with suicide hotlines. No one could help her, until one psychiatrist suggested that she see Susan Swedo at NIMH. Swedo, Melanie’s mother says, recognized the symptoms immediately.

“I remember she told me, ‘You’re going to have your child back,’ ” Christine says. “I wanted to believe her, but at the same time I couldn’t.” Melanie joined a research study at NIH in Bethesda and started getting better after a round of antibiotics. IVIG treatments helped even more.

One day at The Children’s Inn at NIH, where young patients and their families sometimes stay when they take part in studies, Melanie passed a baby grand piano in a second-floor dining area. For two months, she hadn’t gotten near a piano. This time, she took a seat on the bench. She reached out hands that were nearly as pale as the keys and let “The Angel” fill the room. Sunlight streamed through stained-glass windows. As her mother stood and listened, tears welled in her eyes. She was getting a glimpse of the child she used to know.

Since then, Melanie says, she occasionally has a bout of OCD, but it’s nothing like what she once faced. “I feel like telling my story might let other people know they’re going to be OK,” she says. “It’s really rough and it’s scary, but it’s gonna be OK.” 

David Frey (www.davidmfrey.com) lives in Gaithersburg and has written for Sunset magazine, the San Francisco Chronicle and other publications.