Listening for Zebras
The Washington Post
By Marian Sandmaier

 

There comes a moment in a parent's life when you understand that raising a child is less an act of love and fortitude than something much wilder, something that sniffs the wind and bares its fangs at intruders, implacable in its drive to keep its offspring safe. You may not know you have this beast in you; you may see yourself as essentially rational and peaceable, willing to abide by the rules. Then everything changes.

When my daughter first began to complain of headaches last winter, I felt only sadness. I was almost sure that Darrah, then 16, had been ushered into the netherworld of migraines, the familial female curse that had long plagued me, my sister, my mother and my maternal grandmother. I gave Darrah ibuprofen, advised rest, pulled down the shades in her room. It encouraged me that after a nap, she often felt better.

But better never lasted. Over the next few weeks, the headaches became steadily more frequent and severe. Then Darrah began to complain that her eyes felt "squashed," as though some massive, merciless paw was pressing on them. Still I thought: migraines. Finally, my daughter came home from school one afternoon and stood directly in front of me, her face taut and pale. "Mom," she pleaded, "how did I get to have headaches every day?"

 As I looked into my daughter's grave face, some wall within me crumbled. Headaches might be our genetic curse, but this was different. This was unbroken pain. Amateur hour was over. I called Darrah's doctor for an emergency appointment. 

"My headache feels like it's boring straight into my skull," my daughter told the pediatrician as we sat in her office the following afternoon. Darrah then described her painful eyes and two new symptoms that truly unnerved me--a sore neck and a bizarre sensation of fluid sloshing around in her head. The doctor, a briskly affable woman, peered into Darrah's eyes with a tiny optical light, checked her balance and reflexes, and pronounced her probably healthy. "It may just be sinuses," she offered, putting away her instruments.

Sinuses? "What about the neck pain and the weird rushing in her head?" I pressed, realizing that I sounded like one of those panicky, mountain-out-of-molehill mothers who inspire doctorly contempt. "Hard to say," she responded evenly. "Call in two weeks if she still has headaches."

We don't have two weeks to wait, I thought as we stood to leave. I had no proof, not even a theory. Only a gathering fear.

Side Effects

Early the next morning, I sat down at my computer to work on a writing assignment. Without warning or prelude, a thought barreled into my consciousness. The medication!

For the past several weeks, Darrah had been taking an antibiotic—one she'd never used before—for a tenacious skin problem. Grabbing Darrah's pill bottle off the bathroom counter, I ran back to my desk and logged onto the Internet.

Two hours later, I stood up from the computer, dizzy with disorientation. Our lives had just slid off a cliff. No, I kept repeating to myself. No, this can't be happening. Not to Darrah. Please, God.

I had begun my hunt by logging onto the search engine Google, where I typed in "side effects" and "minocycline," the generic name of Darrah's medication. The first dermatology site I opened started out soothingly, noting the drug's salutary effects and describing side effects as "usually minor." Then, scrolling downward, I read:

There are a few significant, but very rare side effects that develop in about one in 10,000 people. One is pseudotumor cerebri, an accumulation of fluid around the brain, which causes progressively worsening headaches and vision problems….

In a fury of mouse-clicks, I landed at a website with the suitably surreal name of "Neuroland." At my request for symptoms of pseudotumor cerebri, it promptly produced a list: Headache. Vision problems. "Whooshing" in the head. The list also included some symptoms Darrah didn't have. But the match felt frighteningly close.

Get a grip, I chided myself. How reliable can a website called "Neuroland" be? I zoomed to the more straightlaced site of the North American Neuro-Ophthalmology Society (NANOS). There, the news got worse. Not only did the site confirm Darrah's symptoms as possible signs of pseudotumor cerebri, but it laid out the multiple horrors of this rare disorder.

Pseudotumor cerebri is characterized by steadily increasing pressure within the brain and spinal column, just as would occur with a tumor—hence the distinctly unreassuring term, "pseudotumor." The pressure is caused by excess cerebrospinal fluid, which is normally pumped into the brain and reabsorbed on a kind of continuous neurological timetable. But sometimes a glitch develops in the outflow mechanism, causing fluid to keep building up in the brain with nowhere to go. The result, warned the NANOS website, is a possibly lifelong disorder involving nearly constant headaches, high-risk drugs, and, in some cases, a plastic shunt inserted between the spine and abdomen to siphon off excess fluid.

Then I read the worst: "The elevated pressure…can damage (possibly permanently) the optic nerve, producing decreased vision."

It's just one website, I told myself weakly. Surely others will contradict it. The next site I checked claimed that the proportion of patients who suffered visual loss was 22 percent. A third site's verdict: 96 percent.

Whom Do You Trust?

I could barely breathe. I had spent the last 16 years mothering a daughter whose energy was electric, whose dreams would fill two lifetimes—doing volunteer work with children in Latin America, learning to surf, becoming trilingual, hearing every great reggae band in the world. Suddenly it was two summers ago, and I saw the two of us pedaling our bikes along a dust-choked rural road on Maryland's Eastern Shore, where we had gone, on a whim, during the hottest spell of the summer. As we pumped single-file past stunted cornfields in 98-degree heat, I began to seriously wonder why I was subjecting my child to this ordeal when Darrah suddenly looked back at me, grinning, her face shimmery with sweat. "Mom," she yelled, "I'm so happy!" 

How would this exuberant, life-gulping kid of mine survive the future I saw reflected on my computer screen: endless rounds of spinal taps that themselves caused disabling headaches, steroid treatments that would slowly devastate her immune system, and daily dosing with acetazolamide, a drug to control symptoms that, in turn, could trigger severe anorexia?

Also, my daughter could go blind.

Anyone who has ever surfed the Web in the throes of medical crisis knows the sense of flailing panic that accompanies the struggle to decipher pitilessly technical information from websites of vastly different quality and reliability. A small chance of vision loss? Or a 96 percent chance? Shunts plunged into the spine, drugs that may cause new medical emergencies--how likely was it all? Recently, The Journal of the American Medical Association reported that more than 40 million Americans search online for health data that is often confusingly presented, wildly contradictory, or dangerously wrong. It's a game of information roulette, and none of us know the odds.

Yet even as my stomach clutched at each new nightmare scenario served up on the Internet, I was aware of feeling grateful. The Web, at least, was giving me something—some crude, blurry outline of what my daughter might be up against, whereas before I had nothing at all. When I stood up from the computer that afternoon, I had in my possession 30 pages of single-spaced data on a barely-pronounceable disease that, two hours earlier, I hadn't known existed. To me, the Web felt like a kind of chaotic support group, feverishly opinionated, a bit shaky on facts, but endlessly generous with its information and time. Right or wrong, I chose to trust it.

A Second Opinion

Later that afternoon, I told my husband, Dan, what I had learned. The look on his face reminded me of the day that I was three months pregnant with Darrah and had to tell him that the pregnancy might be ectopic. "Are you sure?" he asked now, his voice low and constricted. I hesitated, sobered by my new role as messenger of catastrophe. "I just have a feeling," I said, realizing how lame that sounded.

 The next afternoon Dan took Darrah to see her dermatologist, the doctor who had prescribed the offending antibiotic in the first place. She knew this drug well; surely she'd be able to decipher our daughter's symptoms. When I heard the key turn in our front door, I flew downstairs for the report. "The dermatologist said it's not pseudotumor cerebri," were my husband's first words. The reason: Darrah hadn't yet lost any vision.

I struggled to take this in. What, our daughter had to go blind to make a diagnosis? The dermatologist did advise her to stop taking the medication—which Darrah had already done—and switch to a different antibiotic, for which she'd written a prescription. To my husband, this seemed like a reasonable game plan.

 "Forget it!" I barked, and in that moment I realized that I had no capacity whatever to share power in this crisis. When I had asked Dan to take our daughter to the doctor's, I'd thought I wanted a collaborator, or at least a partner in worry. But in truth, I was so hopped up on adrenaline and a kind of blind, frantic impulse to fend off all threats to my child, real and imagined, that I couldn't let anyone else make a decisive move in her direction. Stay back or else.

I held out my hand for the prescription slip.

Gingerly, I took the piece of paper, as though it might burst into flames. Then I went upstairs for a second opinion. Sitting down at the computer, I entered the name of this new antibiotic into Google. A profile of the drug with a list of minor side effects popped up. Then, further down the page, under "rare complications," I saw two words that literally made my jaw drop.

Pseudotumor cerebri. 

I felt a jolt of pure rage. At this point, two doctors had shrugged their shoulders at my daughter's apparently severe neurological symptoms. One wrote it off as a benign headache, without ever asking if Darrah was on any medication. The other had dismissed the possibility of pseudotumor cerebri, then prescribed a new drug known to cause the very disease my daughter already seemed to be suffering.

On the other hand, who was I to diagnose a rare disorder—on the Internet, no less? I was a medical dabbler at best, and a knee-jerk pessimist to boot. If there was something that could go wrong—a furnace that might explode, a tax return that could be audited, a friendship that might sour—I always knew that it would. At the moment, all I had was a tall stack of Web printouts and a passion for my child's health, against the consensus of two physicians with roughly 30 years of clinical experience between them.

Plus, this is a rare disease, I reminded myself. Got that?  Rare means hardly anybody gets it. Then another voice rose up, urgent, unbowed.  But it means some people do.

Hearing the Hoofbeats

I remember reading somewhere that medical students are taught to diagnose disease according to the following principle: "When you hear hoofbeats, first think horses, not zebras." In other words, when you look at a patient's symptoms, first assume a common malady, not a rare or unlikely one. When my daughter's doctors assessed her symptoms, they clearly heard horses. But I couldn't help it: I was hearing zebras.

Maybe, it occurred to me later, this gets as close to the heart of parenthood as anything—the capacity to hear zebras when our children are  at risk. When our own health wavers, we often brush it off, put it off, not a big deal. But when suffering visits our kids, it's as though invisible antennae sprout and unfurl, equipping us with a capacity for sensing danger that we never knew we had. Sometimes, of course, we lose our way. We miss plain-as-day trouble signs, or we overreact, tracking down catastrophic figments of our own imaginations. Still, we stand watch as best we can.

I think of my friend Terry, who tenaciously followed a trail all the way to the National Institutes of Health to discover that her daughter's suddenly obsessive-compulsive behavior, which her pediatrician had dismissed as "willful acting out," was actually an atypical reaction to a strep infection. Her child needed medication, not discipline. Or my colleague Dale, who watched her normally high-energy son suddenly droop in exhaustion, his face the color of library paste. She hounded physicians for tests until he was diagnosed with IgA nephropathy, a rare, kidney-destroying disorder. Then she took him off the potent immune-suppressive drugs prescribed by his doctor and undertook a three-year search for a safe and effective treatment, eventually finding it in homeopathic medicine.

Now it was my turn. My daughter was in trouble and I was jolted awake, by the sound of zebras. I heard their hoofbeats, rhythmic, stealthy. They were galloping closer; soon, I knew, they would thunder into view. If no one else heard what I heard, I no longer cared.

Taking Control 

I called Darrah's dermatologist and pediatrician and told each of them that I had rejected their diagnoses, had come up with my own, and planned to proceed accordingly. When I said the words "pseudotumor cerebri," each of these doctors went very quiet, and I couldn't tell whether they thought I was a nut case, feared a lawsuit, or both. "I want you to write me referral to a neuro-ophthalmologist," I informed the pediatrician, adding, "I'll find the doctor myself."

And that is how, a week later, Darrah and I found ourselves in the waiting room of the Department of Neurology of the Hospital of the University of Pennsylvania, in Philadelphia. The cavernous room was full-up with patients, old and young, some in wheelchairs, many in obvious pain. Clearly, this was where you ended up when things had gotten really bad.

 By now, Darrah could describe her symptoms in a few, vivid strokes. "Inside my head, it sounds like the Telltale Heart," she told Laura Balcer, the young neuro-ophthalmologist I'd chosen on the strength of a doctor-neighbor's testimonial: "Compulsively thorough." Dr. Balcer ran Darrah through a lengthy battery of neurological checks, then trained her tiny ophthalmoscope into my daughter's eyes for what seemed like an eternity. Finally, she leaned back on her stool and gazed at us, her blue eyes sober.

"There is a rare condition," she said, "known as pseudotumor cerebri."

A guilty thrill of relief rolled through me. Confirmation, at last. Then I took in what this doctor had actually said. I glanced at Darrah. She waited, perfectly still. 

"I'm doing some research on pseudotumor cerebri," Dr. Balcer continued, "and my best guess is that this is what Darrah's dealing with." She paused. 

"But as far as I can tell, it's resolving on its own."

"Yes!" burst out Darrah. I sat in stunned silence as Dr. Balcer explained that her examination showed essentially normal brain and eye function. Sometimes, she said, antibiotic-triggered pseudotumor cerebri simply reverses itself, especially if the patient gets off the toxic drug fast enough. Sweet visions of ordinary life flooded my brain—no lumbar shunts, no steroid infusions, no eye damage forever clouding my daughter's world. To be on the safe side, Dr. Balcer ordered up some tests and a follow-up visit, especially since Darrah's retinal veins weren't pulsing as robustly as they should.

Two weeks later, we showed up for follow-up. "Pulsations!" exulted Dr. Balcer as she peered into Darrah's eyes, and my daughter and I raised our fists and took up the cry--Pulsations! Pulsations!--giggling at the spectacle of our unbounded joy at the news of well-behaved retinal veins. In the weeks and months that followed, Darrah's symptoms slowly subsided until, one day, they disappeared. Today, my daughter is recovered, healthy, as unstoppable as ever. In a few short months, she will leave home for college.

The Lucky Ones

  Yet even now, I sometimes find myself thinking back to the day of our first appointment at the University of Pennsylvania's neurology department, after we'd met with Dr. Balcer and heard the wondrous words: "It's resolving on its own." On that late winter afternoon, after dropping Darrah off to do homework with a friend, I walked into our darkening house and sat down at the dining room table, thinking maybe I would open the mail. Instead, my shoulders suddenly hunched, and I was weeping.

As I sobbed into my fists, I could not have named all the reasons I was finally crying. I understood only that there were plenty of reasons—for relief, for pent-up grief, for impossible good fortune. I cried because I had let my child take a drug that could damage her, and because her body, miraculously, seemed to know how to knit itself back together. I cried because I loved my daughter so much I could hardly bear it, and simply because I had gone so long without crying.

We were the lucky ones; I knew that. For had this sudden and baffling medical crisis struck before the vast resources of the Internet had become available to ordinary people, Darrah might have lost her sight. And I was acutely aware of the blessings of my particular life, which had granted me the means and know-how to scour the Internet for my child's mysterious affliction, when millions of parents had no such chance. For the Web, I had come to understand, was quintessential zebra territory, a place where one could easily get lost in the thickets of fallacy and zealotry, but also where one had a chance—not a certainty, but a fighting chance—to encounter and, finally, to name the beast. 

I let myself weep long and hard until, at some point, the terror began to leak out of me. It wasn't gone—Darrah wasn't quite well yet—but as I sat at the table, wiping my eyes with a placemat, suddenly I could imagine a day when I would wake up and wonder about nothing more momentous than my next writing deadline, or what I would make for dinner that evening. Afterward, I would badger Darrah to do the dishes; she would sigh, promise to do them later. And Dan and I would take a long walk, trading the small, remembered moments of absurdity and discovery that each of us had collected over the course of the day.

But for now, I would stay on my watch, straining for whatever faint, wild sounds might still stir the air. I would listen, and pray for silence.

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