A Journey to the Medical Netherworld

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Having a sick child is never easy. But if your child has to be sick, hope for something mechanical: a broken bone, a gash that needs stitches—something that can be physically mended. Failing that, wish for something commonplace. Chickenpox, a bladder infection, bronchitis. Doctors can manage these things with their eyes closed. If pushed, consider the merits of illnesses that are at least well understood—illnesses that can be definitively diagnosed and have generally agreed-upon courses of treatment. What you least want is something obscure, something not yet well characterized—and least of all, something both obscure and pertaining to the mind.

Seven days after the red face, and two days after the swelling had subsided, we knew for certain that our problem was not over. Something new had emerged: our daughter was unable to go to school. On the Monday, she said she was too tired. On the Tuesday, she said she needed another day. But when Wednesday rolled around and she hunkered under the dining room table weeping while her sister set off, we knew something was truly amiss.

At first, we suspected stress. She did well in school, but had lately been frustrated with homework. Could it be that? She said no. Maybe she had been bullied. Had other kids been mean to her? No. Was she unhappy? Was something bothering her? Did her ear still hurt? It was none of these things, she insisted. She really wanted to go, she said. But she couldn’t. She didn’t know why. 

We racked our brains. She was a mostly healthy kid, but had some anxieties. She couldn’t fall asleep on her own, for instance, and couldn’t stand doctors giving her needles, checking her ears or palpating her stomach. But this anxiety seemed different. My mind wandered back to an accident she’d had in the summer, where she’d slammed her head on the sidewalk. Could it be some post-concussion syndrome? It seemed unlikely. Then there was the fact that she’d been diagnosed years earlier with Tourette’s syndrome. Her tics were mostly throat-clearing, blinking and head-shaking—mild enough that her pediatrician was suspicious of the diagnosis—so that didn’t seem a likely cause either. We were stumped.