Saving Kendall: The Search for a Cure for My Daughter's Terrifying Seizures

My sweet, smart, creative 8-year-old changed overnight, afflicted by terrifying seizures that even our doctors didn't fully understand. The journey to find her cure transformed our family forever.
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Sudden Seizures: Bedtime Terror

"The EEG indicates that your daughter is continuing to experience little seizures," the doctor informed us. As I tried to digest this information, all I could picture was a bald midget in a toga, jumping up and down and squawking "Pizza! Pizza!" a la the Little Caesar's TV commercial. Little seizures, Little Caesar's. Unable to process the gravity of the situation, my mind drifted instead to the absurd. How my husband and I had come to find ourselves in the pediatric unit at a university medical center being told that our 8-year-old daughter, Kendall, had a serious neurological condition was beyond my comprehension. And there was no way I could imagine the traumas that still lay before all of us.

It was May 2000, and a few nights earlier we'd tucked Kendall and our other children, Kyle, 9, and Gillian, 6, into bed when I heard it -- a gagging, choking noise. Racing to Kendall's bedside, I found her eyes rolled back in their sockets and her whole body contorting in spasms. "Scott, quick, come here!" I shouted to my husband.

The first to arrive was Kyle. "Dad, something's wrong!" he screamed. Scott, who'd had a college friend who suffered from seizures, immediately recognized what was occurring. "Call 911," he said, holding Kendall while my trembling fingers sought out the impossibly small buttons on the phone. How could he remain so calm while our daughter gasped for breath?

We were waiting for help to arrive when, after a few minutes, Kendall's seizure subsided and she lay motionless, staring and unable to speak. When the EMTs arrived 10 minutes later, she remained a near-lifeless zombie; the lively, spirited child we'd put to bed was nowhere in evidence. EMTs checked her physical responses and vital statistics and relayed the results to the hospital over their walkie-talkies. After they had waited an hour to make sure she was stabilized, Kendall, by then more lucid but still uncommunicative, was finally loaded into their ambulance.

We spent about four hours in the ER, as the staff tested Kendall's neurological responses. Since she'd had no head injury, illness, or family history of seizures, the doctor determined that Kendall's seizure was idiopathic, meaning of no known cause. Her vital statistics looked good, her responses were returning and she was able to talk, so he sent us home, suggesting we all get some sleep and see our pediatrician in the morning.

Still, she seemed pretty out of it. She seemed confused and disoriented, talking as though there were a frosted glass wall between her and us.

At the pediatrician's office, Kendall was asked to touch her nose with her fingers, walk a straight line, extend her arms, palms to the ceiling, and hold. My daughter's once-steady hands trembled. Kendall remained cheerful but complained that her head felt as though it was spinning and spoke in an uncharacteristically soft and tentative voice.

The pediatrician determined that Kendall was doing well. "Sometimes these things just happen," he told us. "Hopefully we won't have any more problems. We'll schedule an MRI, EEG, and CT scan in the next several weeks just to rule things out. Until then, just go on about your lives normally."

Continued on page 2:  Questions & Worries

 

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