January-February 2016 | Featured Article

The Mystery of PANDAS

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

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Scientists have known for more than a century that strep can lead to harmful psychological disorders. In the 1800s, strep was identified as a trigger for Saint Vitus Dance, now known as Sydenham’s chorea, which causes patients to jerk their hands and feet and contort their faces. The link to OCD didn’t come about until the 1980s, when National Institutes of Health (NIH) researchers noticed that some children taking part in an OCD study had recently contracted strep. They wondered: Could the two conditions be linked? Swedo’s group investigated and concluded that yes, in some cases, strep does lead to OCD. Studies that followed reached conflicting findings, though, leaving the medical community divided for years and prompting many family doctors to refuse to recognize and treat PANDAS.

During a 2010 meeting at NIH, scientists on both sides of the argument agreed on a new diagnosis called “pediatric acute-onset neuropsychiatric syndrome,” or PANS, a broader classification that includes triggers other than strep. Both terms are used now. But many pediatricians have remained skeptical that PANDAS is different from other types of OCD. In February 2015, the Journal of Child and Adolescent Psychopharmacology broke new ground, publishing a special edition that focused on PANS and PANDAS and was designed to help doctors diagnose and treat the disorders. “Together, these articles represent the initial push in a coordinated effort to systematically study PANS,” the journal noted in its introduction.  

That was good news for those who acknowledge PANDAS, but some doctors remain wary. Donald L. Gilbert, a neurologist at Cincinnati Children’s Hospital Medical Center, told The Wall Street Journal in July that he still saw little evidence to support treating PANS or PANDAS any differently than other types of OCD. “The long-term course is not different,” he said.

But PANDAS specialists insist that unlike ordinary OCD, PANDAS has a physiological cause. They believe that treating the inflammation in the brain makes the disorder go away.

Like many parents, Rockville mother Hayley Flack first turned to the Internet when her daughter’s sudden, bizarre behavior led her to suspect PANDAS—a disorder she knew about through a family friend whose child had been diagnosed with it. While searching online, she found the PANDAS Network, a group that was started in 2009 as a way for parents to swap stories and information. Since then, the network has evolved into a nonprofit that supports parents, doctors and researchers, and advocates for more PANDAS awareness and treatment. “They were like a lifeline to us,” says Flack, a consultant to nonprofits who now sits on the board of the PANDAS Network.

It was July 8, 2012, when her 6-year-old daughter, Layla, threw a tantrum about going out to dinner. A few weeks earlier, Layla had been diagnosed with coxsackievirus, which can produce flu-like symptoms in children. She was usually a well-behaved child, but when she got out of the bathtub that evening, she went crazy. “Her eyes got wild-looking and she was just screaming for 45 minutes,” says Flack, who believes her daughter also had strep throat that wasn't diagnosed. Layla refused to get dressed or to brush her hair. Her sudden rage was unlike her, but over the next few weeks, such outbursts became routine. Food didn’t smell right, and she stopped eating dishes she used to like. She obsessed over her appearance. Worried that her neck was “hideous,” she insisted on wearing turtlenecks in the heat of summer.

“She literally would build a fort and stay in there, saying, ‘I can’t come out,’ ” says Layla’s father, Brian, a corporate attorney.

Their family doctor was skeptical about PANDAS, but when they consulted another pediatrician, she directed them to Latimer, who recognized her symptoms and started IVIG treatments. The IVIG took care of Layla’s symptoms, but she’s had minor flare-ups since then, usually after being near sick kids. Parents say PANDAS can be a recurring nightmare—children may get it again and again, often after being exposed to someone with strep or other infections. Sometimes, Flack says, her daughter shows an “edginess,” or becomes unusually emotional, signs that PANDAS hasn’t completely gone away.

The Flacks are always on the lookout for signs of PANDAS in Layla’s brother and sister, too. Because the disorder seems to have a genetic component, it’s not uncommon for siblings of children who’ve had PANDAS to also develop it. That’s what happened to Jake Wiederhorn’s sister: She showed some early signs of PANDAS, but after antibiotics and a tonsillectomy, Debbie says, “she’s doing great.” It hasn’t happened to Layla’s siblings, but if they do get it, Hayley says, the family knows there’s treatment.
“If PANDAS does come back, we’re well equipped to deal with it now,” Brian says. “But it always sits there in the back of your mind.”

Debbie Wiederhorn says Jake's struggle with PANDAS has made the family stronger.

Seventeen-year-old Jennifer (her name has been changed at her family’s request) can talk about her struggles with PANDAS now—seven years after they began—though sometimes remembering that time still brings tears to her eyes. “It’s like you’re a slave to PANDAS,” she says. “It literally runs your life. It runs everyone’s life.”

Jennifer was a happy, fun-loving Bethesda fifth-grader earning straight A’s at her private elementary school, says her mother, Peggy. Then suddenly, after coming down with what seemed like a cold, she was caught in a coil of obsessive thoughts and compulsive actions that tightened around her. “I didn’t know what was happening. It was just so sudden,” Jennifer says. “It slowly got worse and worse.”

It all began with a strange walk—two steps forward, one step back—that Jennifer kept repeating. She started hopping in strange patterns, tapping things around her and touching them over and over again. Soon she was twisting herself into positions so painful that it brought tears to her eyes, but she couldn’t stop herself. She would curl up, squeeze her eyes shut and refuse to speak. “The OCD was telling me not to move,” she says. “I had to close my eyes and just stay there like a ball.”