Swedo’s concessions were not enough. A couple of the neurologists at the conference insisted that PANDAS was a failed hypothesis and that the strep idea needed to be scrapped. Like Reagan and Gorbachev in Iceland, the two sides left this summit with long faces and pointed fingers.
One neurologist, Dr. Harvey Singer from Johns Hopkins, agreed to work with Swedo and other researchers on a PANS paper. But after Singer’s name appeared as the lead author with other neurologists on an anti-PANDAS paper published in the influential Journal of Pediatrics, Swedo dropped him from hers. She alleges that the neurologists downplayed the needs of parents and children in crisis, all so they can protect their standing as the only experts on the brain. She put aside her research for a while — it was too hard to “fight the naysayers,” she says — but the desperation of parents “pulled me back in.”
Singer, meanwhile, faults Swedo for suggesting that there is an easy answer to explain and treat OCD and tics when, he argues, there is no good science to show that strep-triggered autoimmune PANDAS even exists.
Dr. Michele Casoli-Reardon is a child psychiatrist at North Shore Medical Center and an on-call specialist for MCPAP, the state’s referral service. With more than a decade of experience in treating PANDAS patients, she has tried to educate her fellow on-call psychiatrists as well as the front-line pediatricians. In her experience, some doctors steer clear of the diagnosis because of the contradictory medical literature. But many more, she argues, simply know nothing about it.
For Casoli-Reardon, PANDAS became even less of an abstraction when one of her sons developed it several years ago. She can identify with parents who find themselves completely unhinged by it. As for the critics from neurology, she says, “If you’ve ever had a child with PANDAS, you would never, ever say that it doesn’t exist.”
THAT DISTINCTION may turn out to explain a lot about the battle.
Dr. James Leckman, a professor of child psychiatry at Yale and specialist in Tourette’s syndrome, was the lead author on what is perhaps the most persuasive study challenging the PANDAS hypothesis. That long-term study, published in 2011, found no compelling evidence linking the exacerbation of tic and OCD symptoms to new strep infections.
Yet Leckman tells me that in late 2008, well after all the patients had been enrolled in the study, he came to an astonishing realization: He and his coauthors had been studying the wrong children. Most of the kids in the study resembled those he regularly sees in his clinic — children with “garden-variety” Tourette’s and OCD. But after working with more physicians treating PANDAS patients, he had come to see firsthand that there was a distinct group of kids who literally had changed overnight, with dramatic onslaughts of OCD and other symptoms. And these “true” PANDAS/PANS cases weren’t represented in his study in any meaningful way.
Leckman says he lobbied his coauthors, who included Harvey Singer, to admit to this failing in their paper. But they refused, insisting they had followed the published PANDAS criteria in selecting their subjects. Leckman had to concede they were right — the children all met the criteria Swedo’s team had established. It’s just that he now believed those criteria were far too broad. So Leckman’s name was listed first on an influential paper that he felt was technically accurate but missed the larger point.
Nonetheless, Leckman had already become a changed man. Shortly after his epiphany, he says, “I picked up the phone and called Sue Swedo and told her that I had become a convert.”
Leckman says he understands the resistance on the part of the neurologists. “True” overnight-onset OCD patients are rare and are far more likely to be seen by pediatricians, ER doctors, and psychiatrists than neurologists. Yet the neurologists are likely to have to deal with the fallout from PANDAS, seeing parents of kids with well-established conventional OCD who, after surfing the Web, appear in their office demanding antibiotics.
This intensifying standoff between traditional medicine and desperate parents has created what Harvard’s Fuhlbrigge calls “a public health crisis.” More than a year ago, Fuhlbrigge stopped accepting referrals of PANDAS patients to the rheumatology clinic at Boston Children’s Hospital. Given the lack of evidence for autoimmune disease in the patients he had seen and the confusion in the scientific literature, he felt he couldn’t do much for them and he needed to return his focus to rheumatology. Yet instead of adopting the nuanced approach he had taken earlier, others at Children’s Hospital have apparently pushed a much harder line against PANDAS.Continued...