Longform

Treating a Mystery: A Disease Named Pandas May Be Causing Frightening Changes in Children

One night, when she was about nine, Reagan Rhodes insisted to everyone in earshot that she was going to die in her sleep.

Since she'd expire in a matter of hours, she had to say good-bye to her family. This information was conveyed in piercing, sob-soaked screams that chilled everyone in the house.

The chestnut-haired girl with a mischievous smile had already been anxious before bedtime that night; truth be told, she'd been anxious for years. But this was a new level.

"I'm going to die in my sleep tonight," the Kingwood third-grader reiterated to her mom, Candi Rhodes, when she rushed to check on her daughter.

Candi called her pediatrician, who told her to take Reagan to the emergency room. Instead, Candi remained with her daughter and tried as best she could to calm her down. The next day, mother and daughter went to a psychiatrist, who prescribed Ativan and Zoloft.

That night, there was a repeat performance. It took about a week before Reagan shook the morbid thoughts.

The reprieve had a limited shelf life. Night terrors and panic attacks continued throughout the school year, along with the attention deficit hyperactivity disorder that had been diagnosed years before. Topping it all off were the tics and tricks of the mind — the throat-clearing, the incessant blinking, the constant feeling of having to use the restroom. Candi worried about how her daughter would be treated at school; she pulled her out and home-schooled her for the fourth grade.

"Where do we go now?" an exasperated Candi asked one of Reagan's pediatricians. The doctor responded with a sort of Hail Mary: She'd had other patients similar to Reagan — mostly children with ADHD and extreme tics. Some therapists called this Sensory Processing Disorder, and there were nonmedical treatments — primarily occupational therapy.

Candi went into full-tilt research mode. The sensory stuff clicked, but from there she wound up on a site that may just as well have been tailor-made for Reagan. Every symptom matched. On these forums, it was as if every kid was Reagan and every scared and helpless mom was Candi. Some of the symptoms even went beyond Reagan's, including anorexia, depression, age regression, violent rage.

At the end, it was like some punch line to a sick joke: These symptoms were supposedly triggered by the common strep infection. The disorder even had a funny name, Pandas: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.

But, she read, the diagnosis was controversial; many doctors didn't believe there was enough evidence to prove its existence. Many more had never heard of it. Parents swapped stories about which doctors were "sympathetic" and which thought they were crazy. Candi found the name of a Houston physician who claimed to have had success treating these kids.

The doctor put Reagan on an antibiotic. In four days, Candi says, the problems were gone. Now 12, Reagan just won a math honors award at school, where she's also a cheerleader. She's also looking forward to trying out for basketball next year.

"I feel horrible to even think that I allowed my child to be put on all those medicines," Candi says. Like many parents around the country, she is a Pandas believer — part of a growing contingent who want to raise awareness and want the diagnosis accepted by mainstream medicine. To most doctors, there is just no evidence that strep, or any other infection, is causing these symptoms. The parents claim, however, that the evidence is right before their eyes: They got their children back.
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Perhaps the most ridiculously acronymed condition in the history of modern medicine, Pandas was first proposed in 1998 by Susan Swedo, a physician at the National Institute of Mental Health whose research focused on childhood obsessive-compulsive disorder.

Swedo and her colleagues found a subgroup of kids who had experienced a sudden onset of OCD, tics and behavioral changes in the wake of a variety of infections. Swedo focused on those children whose symptoms followed a strep infection. She suspected that, whatever was going on, it seemed to follow the pattern of a movement disorder called Sydenham's chorea.

First described in the 17th century as "Saint Vitus's dance," Sydenham's induces spontaneous and often severe jerking of the limbs, as well as behavioral changes and signs of OCD. It's associated with rheumatic fever, which is triggered by strep and tricks the body's autoimmune system via a process called molecular mimicry, in which antibodies attack the host, and not the intruder. The antibodies wind up attacking the heart and other organs. In Sydenham's chorea, it's believed that antibodies attack the basal ganglia in the brain.

Swedo suggested that something similar was happening with the kids in her study group, only they were presenting with a much broader spectrum of symptoms. However, further studies proved inconclusive: Although there appeared to be a correlation with strep, there was no definitive proof identifying it as the cause. While Swedo had some support from prominent physicians, she also took lumps from others, primarily a well-respected Johns Hopkins pediatric neurologist named Harvey Singer. Singer didn't believe Swedo was completely out to lunch; his writings suggested that the Pandas diagnosis was premature but the general concept was worth exploring. (Today Swedo estimates that as many as 25 percent of kids diagnosed with OCD and tic orders actually have Pandas.)

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Contributor Craig Malisow covers crooks, quacks, animal abusers, elected officials, and other assorted people for the Houston Press.
Contact: Craig Malisow