Diagnosing Nick

But when we finally met with the neurotologist, he hadn't a clue who Nick was. The visit went downhill from there. He began by shushing my husband and me, insisting Nick tell his own full medical history even though he obviously had difficulty just holding up his head. At one point, the doctor left the room without a word and disappeared for a good 15 minutes. Finally I went to look for him, and when he returned he never explained where he had been or what he had been doing. He spoke in monosyllables, answering my questions in the barest of terms. He said Nick had viral labyrinthitis, and that the condition would clear up in a few weeks. But to determine if there was something more than a virus causing Nick's condition, he ordered "vestibular" testing, which entailed body harnesses, floors that dip, goggles with cameras, and chairs that spin. In the end, they only proved what we already knew—Nick was dizzy—but showed no underlying cause. The same inner-ear test the original ENT ordered was also repeated and it showed no damage—the opposite of what the first round of tests had shown.

Through all of this, Nick continued to suffer. Nothing relieved his terrible vertigo. We began using a grading system of 1-10 (best to worst) to define how he felt. At the onset of his illness he went from a 1-2 when he was lying down to a 5 when he was standing. Now he was an 8-10 when he was lying down or standing up. He did not want to go outside because the more activity there was around him, the more he felt as if he were in a sea of chaos. He only ventured up and down the steps at the beginning and end of each day, his feet tentatively grazing the side of each step, not sure that the step was actually there. Reading was difficult because tracking words with his eyes affected his sense of balance. He slept a great deal. It all left him pale and drawn and sad.

We began to push for physical rehab to help Nick walk. When months went by—the ENT clearly uninterested, never following up, in spite of the fact he had written an open-ended note to Nick's school that he was under his care—we sought out a neurologist. He suggested salt pills, mentioning something about fluid retention and blood pressure. When I called eight different pharmacies I learned they no longer existed. Desperate to try anything that might relieve my son's suffering, I gave him Gatorade and added extra salt to his food instead.

By February, Nick looked so dreadful he was hospitalized. We spent seven days there, Nick in his hospital bed and me sleeping on the chair next to him. Restless and worried, I wandered the floor at 3:00 a.m.

At the hospital, Nick had more tests to rule out the bad stuff. Fortunately, those tests came back negative, but unfortunately, the doctors still couldn't give us an answer. All they could say was that yes, something was wrong, but they weren't sure whether the problem was with Nick's ear or whether it was neurological, and all they could do was to offer more tests—new ones he could do as an outpatient. Nick said to me, "A monkey would know there is something wrong. Can't any of these doctors figure out what it is?" Still, it was time to leave and get Nick home. The stay had taken its toll psychologically on both of us. Besides, there is only so much jello one can eat.

After Nick was discharged, he continued to be tested for everything I could think of—by this point, I was doing extensive research myself—from exposure to heavy metals to various dystrophies.