Christina Teague barely had time to react as her son, Will, lunged for the door of her car full of children, trying to wrench it open while yelling frantically, “I’ve got to get out!” Teague managed to pull to the side of the winding country road near their Charlottesville home as Will, nearly 8, leapt out of the car.
“He kept saying, ‘The car smells funny,’ and refused to get back in,” Teague recalled, astonished that her normally self-possessed second-grader would fall apart in front of his little sister and her friends, who stared, goggle-eyed, from the back seat. When Teague’s efforts at reassurance failed, she called her husband, who left work. After an hour, Will’s father managed to coax their son into his car, and they drove home.
That November 2007 episode was the first of Will’s bizarre and inexplicable meltdowns; it would not be the last. For the next 16 months specialists in three states offered various explanations for why Will had suddenly morphed from a sociable, well-adjusted kid into a fearful boy so beset by crippling obsessions that he refused to sleep alone, go to school or even play with the family dog. “We went from having a fun-loving, independent 8-year-old to a child who was more like a 2- or 3-year-old,” his mother recalled.
The surprising — and surprisingly common — cause of Will’s problem eventually led to a somewhat controversial treatment that appears to have cured him. Now 11, he shows no signs of the anguish he and his family endured.
During a Thanksgiving visit to San Diego a week before the car incident, Will had run a slight fever, then seemed to recover. His parents initially hoped the car episode was a fluke, but a few days later something similar happened: During Sunday brunch at a restaurant, Will suddenly got a panicky look on his face and bolted outside, complaining of a strange smell.
Will’s outbursts prompted Teague to take him to the pediatrician, who found nothing wrong. After a second visit, the doctor determined that Will might have strep throat and prescribed a 10-day course of amoxicillin.
Will said he felt better, and his anxiety seemed to wane. But three days after stopping the drug his fever and sore throat were back, as was the severe anxiety. Teague and her husband, who both had successfully battled panic attacks of their own, thought maybe Will was developing the same problem. Teague also noticed something else: Her son had begun repetitively throwing his head back and sniffing, as if he had a runny nose.
After a Christmas vacation punctuated by visits from worried grandparents (both grandfathers are retired doctors), school posed the next hurdle. A previously good student popular with his classmates, Will told his mother he didn’t want to go to school. Unable to ride the bus because the noise and rocking movement upset him, he also couldn’t bear to be separated from his mother, although that had never been a problem before.
“The janitor or vice principal would come to the car and peel him off me, screaming and crying, as they dragged him into school,” Teague recalled. He developed insomnia, grew extremely fearful of germs — leading to his refusal to play with the family dog — and was so afraid of vomiting that he began eating lunch alone in the school cafeteria, avoiding his many friends.
A pediatric neurologist in Charlottesville thought Will might have a sensory processing disorder, a neurological problem marked by a flawed response to environmental stimuli; a child psychologist diagnosed severe anxiety and recommended cognitive behavioral therapy, a form of talk therapy.
By the spring of 2008 the intensity of Will’s problems seemed to wax and wane but never disappeared entirely. Teague noticed that when he took antibiotics for strep throat or another bacterial infection, his obsessions and fears diminished. A developmental pediatrician said Will’s problems might be linked to an infection, but that such cases are rare; she believed his disorder had an emotional cause. A child psychiatrist at Duke University School of Medicine, where the family sought another opinion, echoed that view.
Struck by the improvement she had witnessed when her son was taking antibiotics and by a friend’s similar experience with her daughter, Teague had become convinced that Will’s symptoms had a physical cause. After an antidepressant and an anti-anxiety drug failed to help him, she persuaded her skeptical pediatrician to prescribe a four-week course of antibiotics as an experiment.
The results were dramatic: Will’s anxiety largely disappeared, even after he stopped taking the drug. He rode the school bus again, began sleeping without a parent in the room and started seeing his friends.
But in January 2009, after a week-long bout of flu, Teague said, “It was like he fell off a cliff.” Will’s obsessions and fears were back with a vengeance; he told his mother he was afraid to go outside because he worried that the cold air would make him gag.
“I remember thinking, ‘What do I do?’ ” Teague recalled, by now convinced that an infection was the cause of her son’s problems. Through a contact at the National Institute of Mental Health, she was referred to Josephine Elia, a psychiatrist at Children’s Hospital of Philadelphia.
Elia, who saw Will in March 2009, said her diagnosis was based largely on Will’s history. His age; the sudden onset of his obsessions; the improvement after antibiotics; the repetitive sniffing, which was actually a tic; and the lack of any other credible explanation for his behavior were characteristic of a newly described disorder called PANDAS, an acronym for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
The PANDAS diagnosis, which has been controversial, was first descrribed in the mid-1990s by NIMH behavioral pediatrician Susan E. Swedo. She noticed that some young children developed obsessive-compulsive behaviors such as excessive hand-washing seemingly overnight; all had been treated for strep throat. Their blood contained high levels of strep antibodies; when the children took antibiotics, the behaviors abated. Swedo speculated that the strep infections might have triggered an overactive immune response, leading to the symptoms of obsessive-compulsive disorder, or OCD.
Critics said the association with strep infection was mere coincidence, but in recent years that view has shifted as studies have appeared to confirm a link between strep infection and the sudden onset of OCD behaviors and tics. In 2009, researchers at Columbia University published an influential report demonstrating that strep infection can trigger PANDAS-like symptoms in mice.
There is no test for PANDAS, according to the NIMH; doctors instead use five criteria to make the diagnosis.
“It’s a really, really difficult condition to study,” said Elia, because elevated levels of strep antibodies can last months, even a year, after infection. Nor, she said, is it clear why only some children are affected, since strep throat is a nearly universal childhood illness.
In Will’s case, the dramatic, all-encompassing nature of his impairment, was a tip-off, Elia said. “If it was regular OCD, those symptoms often begin gradually and don’t go away.” Elia said that although some doctors remain skeptical, “I think more and more pediatricians are certainly aware of it” and accept it.
If the diagnosis has been controversial, treatment is even more so. Some children receive prolonged courses of antibiotics, sometimes for years, while others undergo tonsillectomies or plasmapheresis, a process that removes and cleanses their blood. None of these treatments is routinely endorsed by NIMH, because there is insufficient proof that they work. The Institute recommends that children with PANDAS receive cognitive behavioral therapy and/or a medication such Prozac, both of which are used to treat OCD.
After concluding that Will had PANDAS, Elia suggested that the Teagues might want to consider tonsillectomy; her clinical experience as well as some published case reports have concluded that the operation helped, possibly because residual infection can sometimes hide in the crevices of tonsils where antibiotics cannot easily penetrate. In July 2009, Teague found an ear, nose and throat specialist in Charlottesville who agreed to operate on Will. “He’d just been to a conference and had heard about PANDAS,” she said.
Teague is convinced that the surgery has made a big difference. For the past two years, Will has shown no sign of PANDAS, even after getting an occasional strep throat or bacterial infection. Last summer he spent three weeks at an overnight camp, something that would have been unimaginable just a few years ago.
Looking back, his mother said, is “very painful. I feel we are one of the lucky families” because a solution did not take years to find. “Not a day goes by that my husband and I don’t think about what Will has experienced.”
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