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

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."

Questions & Worries

Heading home, we stopped for lunch at a nearby restaurant and ordered. Reaching for her drink, Kendall's arm dropped onto her plate of fries and into a pool of ketchup.

"What happened?" I asked with alarm.

"I don't know. It just fell," she said. Moments later, while lifting her glass, her arm dropped again, knocking water everywhere. Immediately we phoned the pediatrician, who ordered us to the hospital.

During the next three days, Scott and I took turns staying at the hospital and shuttling Kyle and Gillian to and from school, making meals, feeding the pets, and showering in a rush. The CT scan and MRI eliminated some of the worst-case scenarios, such as brain tumors and strokes. It was a gorgeous Friday afternoon when we learned the diagnosis: childhood seizure disorder. The doctor said Kendall would need to take medication for at least two years, during which time her blood levels would need to be checked regularly for liver toxicity, which could occur from the meds.

So we returned home with a fragile child and a new fear of allowing Kendall to do many things that kids take for granted -- swimming, climbing trees, ice-skating. What if Kendall had a seizure while biking and got hit by a car? Until her medicine began to work effectively -- which could take weeks or months -- she had to avoid such activities unless continuously supervised. Even worse, during these first few weeks her cognitive skills were still impaired; once-simple mathematical equations were now a struggle, and this from a child who had recently tested in the 98th percentile in cognitive abilities at school. And her hands still trembled, reducing her handwriting to a kindergarten scrawl and making it difficult to pick up small things such as M&Ms.

Was this temporary or permanent? It was hard to tell, since we didn't know how long her initial seizure had lasted and whether it had caused a deprivation of oxygen to her brain. But what I was seeing made me believe Kendall would have to relearn everything. I found myself grieving for unexpected things. For instance, Kendall, always fascinated with space exploration, could now never become an astronaut -- only those with impeccable health records qualify for that job. I dreaded the day I'd have to break that news to her.

Drug Dilemma

When Kendall was released from the hospital, we were given a prescription for the anticonvulsant Tegretol and the pager number of the neurology resident who had treated her in the hospital. During that crucial first month, Kendall never had a day during which she felt well, let alone normal. She often said her brain felt strange but struggled to convey what she was experiencing. As the weeks progressed, she became more tentative in her actions, quiet, withdrawn. She experienced more "drop seizures," similar to the incident at the restaurant, in which some body part -- neck, arm, leg -- would suddenly and arbitrarily lose support. She would often have a glazed, disoriented look in her eyes. Unable to resume school, she became isolated from friends. We had found an esteemed pediatric neurologist, a specialist I'll refer to as Dr. A., at our local hospital, but after a brief initial visit, we could reach him only through the hospital resident. We'd contact her, she would contact him, he might then contact us -- a twisted version of the childhood game telephone tag. I suspected that the Tegretol was to blame: It seemed that as we gradually increased her dosage, as per the doctor's orders, the drop seizures increased in frequency.

After Kendall fell down a flight of steps for the third time in one week, I demanded a call back from Dr. A. "Mrs. Gardiner," he said disdainfully, "this medicine is helping her. You must be patient. These things take time."

But patience was not an option when our child could no longer bring a spoonful of hot soup to her mouth without fear of injury. We needed to seek counsel elsewhere. Two months after our ordeal began, we drove four hours to meet with a nationally renowned pediatric neurologist, whom I'll refer to as Dr. B., at one of the East Coast's premier medical centers. Contrary to Dr. A.'s opinion, he determined that the seizure activity shown on Kendall's EEG was negligible and didn't merit the use of an anticonvulsant. He happily noted that she seemed lovely to him, and that was that. We were learning there were different schools of thought on seizures, but we didn't know into which one to enroll. Were her seizures the benign type often associated with childhood, which are usually outgrown? Or were they temporal-lobe seizures, which could increase in frequency and intensity with age, leading to unstable emotional behavior? There was no consensus, no certainty.

By now it was summer. Reluctant to allow Kendall, a passionate swimmer, into the pool without constant supervision, we compromised, insisting to her great dismay that she wear a bright-pink swim cap so that I could easily spot her. We'd finally persuaded Dr. A. to switch to a different medication, Depakote, after a seizure caused Kendall to fall off her bike. Again, her once-effervescent spirit seemed dulled by this drug, and she became bland and sluggish.

Scott and I knew we needed some answers. An SOS to a large online quilting group I belonged to yielded recommendations for a pediatric neurologist, whom I'll call Dr. C., only two hours away from us. To our delight, Dr. C. was friendly, empathetic, willing to listen, flexible in considering treatment options and, equally important, generous with his time. For the first time since our journey began, we felt we had an ally in our neurologist. "Many neurologists won't even think about taking a kid off the meds for at least two years," he said. "But in light of the opinion of Dr. B., and after reading Kendall's EEG report, I'm comfortable with trying to wean her off."

Relapse & Recovery

Kendall finished the Depakote in September. But our optimism was short-lived. She soon began ailing again. In October I got the call I'd been dreading: "You need to come in right away," the school receptionist said. "Something's terribly wrong with Kendall." Kendall had been sitting listlessly in class, staring at the chalkboard. Finally, she stood up and said, "Who are you? I don't know where I am. I need my mom."

By the time I got there, she was only slightly in tune with her surroundings. I called Dr. C., who told us to bring her to the office first thing in the morning for an EEG. "Just what I'd thought," he said, pointing at the screen, explaining that Kendall had suffered a severe seizure. He put Kendall back on Depakote.

By the time her meds were at the prescribed dosage a few weeks later, our child had become a virtual stranger to us, prone to extremes in temperament and completely unable to function academically. One minute she was happily playing with her siblings; the next, she was shrieking at them. She'd sit on the ground rocking back and forth catatonically. Once I found her thrashing about on all fours, screeching at the top of her lungs like an animal. Feeling desperate and hopeless, I would retreat to my room and sob. Meanwhile, Kendall's illness was taking its toll on the whole family. Most nights Gillian woke repeatedly from nightmares; Scott and I, already emotionally drained, became physically exhausted. The kids, echoing our stress and tension, bickered constantly.

I called Dr. C., who recommended weaning her off the Depakote and starting her on a newer anticonvulsant drug, Lamictal. A few weeks later, Kendall joined Scott on a five-day business trip to New York City, an annual tradition the kids had always enjoyed with their dad. When they returned, I was shocked to see her ghastly gray pallor and sluggish demeanor. This transformation had occurred gradually over the week of their trip, so it wasn't as obvious to Scott, who had been with her the whole time.

I called Dr. C.'s office, but this time I had to leave a message, as calls were now being triaged and dealt with as needed. Days went by and I still didn't get a response. I phoned again, and this time screamed into the receiver. "Something is wrong with my child, and I am not going to wait until she's dead to hear from you!" My ranting got immediate results, and Dr. C. agreed to see Kendall the next day. First he administered a brief test to determine Kendall's reading comprehension. "She's perfectly normal," he said. "She's working at an age-appropriate lower-third-grade level."

When I pointed out that she had been reading at seventh-grade level nine months earlier, he decided to accelerate weaning her off Depakote. Within weeks we started to see the old Kendall return -- her wacky sense of humor, her dancing around the house and her good-natured teasing. She could print legibly again. She didn't have to concentrate so intensely before speaking, as though whatever was in her brain was stuck and unable to come out.

After Kendall had been on a low dose of Lamictal for a few months, I took her back to see Dr. C. "Wow, she seems so much better now," he beamed.

"Yeah, I can't believe we got the old Kendall back. That Depakote really messed her up," I said.

"Well, I told you about Depakote dementia," Dr. C. said as he rolled his eyes. Actually, no, he hadn't. I went home and researched the drug online and was floored by my findings. Buried deep amid reams of pharmacological information, under "adverse reactions," it read: "Emotional upset, depression, psychosis, aggression, hyperactivity, hostility and behavioral deterioration." Everything I had pointed out to the experts for months. Yet they shrugged it off. My daughter may have lost a year of her life because no one was reading the fine print.

For the next three years, Kendall thrived. Happy and creative, she did well in school, played basketball, swam competitively, and indulged her love of cooking on the side. An EEG in the winter of 2003 indicated no seizure activity, which left us wondering whether it was time to wean her off medication entirely. A call to Dr. B. went unanswered for six weeks. When he finally returned it, he leafed rapidly through Kendall's charts and recommended we discontinue the drug. "But you've told us repeatedly that you were certain Kendall would not be past this until she is completely past puberty, and she isn't yet," I replied. "By weaning her now, will we screw up everything we've worked toward?" He agreed to wait a little longer -- about six months -- before stopping the medicine. In February 2004, we toasted Kendall's final dose with water-filled champagne flutes.

But our elation was again short-lived. Three days later, just minutes before she was to leave for a class ski trip, Kendall blacked out for a half minute. An EEG taken the next day showed she still had some seizure activity. We reluctantly restarted her meds. However disappointed we were, we knew we were truly fortunate that Kendall didn't have the seizure while suspended in midair on a ski lift.

In a few years, once she's past puberty, we'll try again to take her off the medicine. In the meantime, having our daughter back to her normal self has been the best of blessings imaginable for all of us. Gillian's nightmares have ended, the children are no longer fighting, and our family is at peace. Not long after the space shuttle Columbia fell apart in its descent to earth, Kendall said, "You know, Mom, I couldn't be an astronaut even if I wanted to."

"Oh yeah?" I asked. "Why not?"

"Because of my seizures," she said nonchalantly. And she happily skipped off to play with her friends.

Originally published in Ladies' Home Journal magazine, August 2005.