Diagnosing Nick

On a beautiful October afternoon last year, my bright-eyed 12-year-old son went for a bike ride and returned 15 minutes later with a lackluster gaze, a face devoid of color, and the feeling he was on a boat in the high seas. That moment began a medical mystery that has rocked our family's world, and taught us how ill-equipped our medical system is to diagnose complicated cases. It has also taught us never to underestimate the mind's power to help heal the body, and a physician's confidence to heal the mind.

Fatigue set in a day after Nick's dizziness started. Swollen glands followed close behind. Our general practitioner ordered blood work, including studies for mononucleosis and Lyme disease. When everything came back negative, we tried steroids for Nick's swollen glands and a round of antibiotics in case he had a bacterial infection. When the dizziness and fatigue persisted we wondered aloud if the culprit might have been the flu shot he received eight days prior. It was presumed he had viral labyrinthitis (an inner-ear disorder) that would pass in a week or two.

When it didn't, and his tonsils grew exponentially, we tried a different antibiotic. All the while, he was perched in a makeshift bed on our first floor—an overstuffed chair and aging ottoman with a twin sheet stretched to its limit. Suffering from extreme vertigo, Nick was unable to walk up the stairs to his bedroom. He could not lift his head without looking as if he were drowningand mostly slept the days away. School became someplace his friends went.

The second antibiotic helped his tonsils, but otherwise he remained the same. Frustrated, I went into investigative mode and searched for an ear, nose, and throat (ENT) specialist. It took weeks to get an appointment. "Is he a patient?" I was asked repeatedly. By my zillionth call I figured out the game. Make appointments with everyone and take the soonest first. The ENT ordered allergy tests, an inner-ear test, and an MRI of Nick's curly little head. When it was over, the radiologist who read the MRI said it was Nick's right mastoid, a portion of the temporal bone that was the issue. The ENT disagreed. He said that Nick's right inner ear (seen on the inner-ear test) was damaged, but he couldn't really say why. All he told me was that he doubted he could fix it. Ever.

That's not what a mother wants to hear.

The ENT referred us to a neurotologist (a combination neurologist and ENT) and we were given an "urgent appt.," which really meant waiting several more weeks. The original ENT assured me that he had personally spoken with this new doctor about Nick's case.