Timothy was 10 years old when his personality changed overnight. Compulsive thoughts haunted him, and he became withdrawn, obsessive, and suicidal. His symptoms were hard to treat—because none of his doctors could agree on the cause of the illness.
Swedo and her colleagues included a handful of children’s drawings in their paper, made before, during, and after the kids got sick. One triptych is especially moving, a course of illness in miniature. The “before” image shows a dark-haired woman in a teal cocktail dress, her cat-eye makeup meticulously rendered. The “during” image, drawn in the midst of a flare-up, feels addled by comparison. There are no colors or recognizable figures, just squiggles and disembodied eyes.
But when Frankovich began to taper the dose of CellCept, the girl became depressed; she found it hard to read, remember, and think. Frankovich upped the CellCept and started intravenous steroids again. “Right in front of my eyes, all those mental illness symptoms melted away,” she says. The same thing happened with a 10-year-old boy who had an inflammatory disease of the spine. Overnight, he had developed OCD and tics. Frankovich called his pediatrician and mentioned Swedo’s research.
As the calls and emails kept coming, Frankovich’s team would sift through thousands of medical records, looking for patients with the clearest-cut cases of PANS. She estimates they were able to treat one in 10 patients who applied, if that. They met families who had sold their cars and refinanced their homes to pay for their children’s medical care. Many said, like Rita, that Frankovich’s clinic was the first place they felt hope.proving other doctors wrong for millennia.
Stanford Shulman, the early PANDAS critic, also stressed the need for better data. “Should all older adults take an aspirin once a day? Because that was dogma for a long, long time,” he says. “But then studies came along in the, very large studies demonstrating no benefit and potential side effects, so we do have to change our mind.” He adds, “If we’re proven wrong, and really proven wrong, then we have to change our opinions, and that’s true for all medicine.
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