When Diagnosing Your Child Takes a Team of Doctors

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.

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.

By April, I was losing hope when a teacher of Nick's who had been coming to our home to work with him, reminded me of the Mayo Clinic. I knew it was a place where doctors are paid with a salary, not per patient, and where the concept of teamwork is embraced. I made a number of calls, wrote up my own report detailing his illness, coordinated with several doctors' offices to have all his records forwarded, and within a month, we were on our way from our home in Texas to Minnesota.

In the single week we were at the clinic, Nick's illness was confirmed as the result of the virus that began last October. The team of doctors at the clinic put Nick through a slew of tests. Some of them were repeats of the tests for an inner-ear disorder, but he also went through a tilt-table test for orthostatic intolerance, an eye exam, a neurological exam, strength tests, autonomic nerve tests (to be sure he had no permanent damage) and blood work. The doctors told us that Nick's dizziness stemmed from his inner-ear damage, caused by the virus, but that it could be reversed over time with intensive physical therapy that focuses on balance. We are lucky that the ear damage did not affect his hearing. Though the doctors said it could be six months or longer before the dizziness is gone, Nick now had a goal—and hope.

Each physician was confident, kind and invested in Nick. They built on each other's findings and relayed information. With their confidence, so too came my son's. It seems that a big chunk of Nick's difficulty in walking has been Nick. He's been afraid. At one point, after a conversation with him about the importance of pushing on, about the role positive thinking plays in healing, we walked into the clinic'smuseum. A short film about the clinic's history talked about how Dr. Mayo wanted to create a place where patients could be diagnosed using a team approach and where they could learn about the importance of the mind to healing. A light bulb went off in Nick's head.

When we returned home, he lined the upstairs hallway with blue painters tape laid out in rows and boxes. He followed the rows like a game of hopscotch without the hop—attempting to keep his feet in the boxes until he got to the last box and turned around to do it again. Sometimes he sang the Rocky score when he got to the end. Sometimes I did too.

It's been just over a year since Nick's illness began. He still tires fairly quickly, but at the end of August he was able to return to school with a schedule that was specially designed in case he needs to cut his days short. Thanks to physical therapy, the power of hope, and the physicians at Mayo—who saw beyond the clinical to the real boy in front of them—Nick's dizziness has finally relented. The future is once again filled with endless possibilities for Nick, an aspiring filmmaker, who now spends his free time honing his craft, and dreaming about the day he can return to the clinic and give back. And when he does, I'll be proud to be by his side.