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

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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.

Continued on page 3:  Drug Dilemma

 

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