 
 What Kayla was experiencing is called status epilepticus— continuous seizures (with, in her case, a prolonged period of post-seizure confusion)— which is considered to be very serious. Kayla spent one week in hospital hooked up to a heart monitor, oxygen and an IV. The new antiepileptic drug Topamax was added to her other two seizure medications.
Today, on three drugs, Kayla still gets one small atonic (drop) seizure and quite a few absence seizures (brief staring spells) every month. During her atonic seizures she will go limp, fall, and wet her pants. Once she had a seizure and fell down the stairs.
At her swimming lesson not too long ago, Kayla felt a seizure coming on and got out of the water. Her swimming instructor insisted that she get back in the pool. Kayla took off her bathing suit and stood naked in protest. "My mom says I don't have to swim if I'm not feeling good," she announced. And then she had a seizure.
Getting Kayla to take her medications three times a day is a challenge, because of how they make her feel. The Depakene makes her sick to her stomach. Her hands shake, and she feels sleepy. Once the pharmacist substituted a generic drug for Depakene and Kayla refused to take the unfamiliar medication! She also had more seizures while on the generic, so the doctor has ordered "No substitutions" on Kayla's Depakene prescription.
Kayla is not growing normally, and we don't yet know why. At five years old she is the size of a two year old, weighing the same amount as my 18-month-old toddler. We have to have clothes specially made to fit her small 21-pound frame. She doesn't eat much, and is still vomiting from the antiepileptic medication.
Kayla, who is French-speaking, is going to an English school this year. Her development is still a little slow. We have had to fight for various accommodations—Kayla has an accompanying aide in the classroom—and I find these battles tedious. But the kids adore her, and so far, everything at
school is going well.
Kayla is very cute and has a charming personality. She comes out with the funniest expressions, and will dance a jig (getting others to join her) at the drop of a hat, no matter how formal the occasion.
Because of her poise, Kayla has become a bit of an epilepsy spokesperson in our community, being interviewed on a television show as well as addressing an audience of politicians and officials at the official launch of the Canadian Epilepsy Alliance. When the TV interviewer asked her what it's like to have epilepsy, Kayla's answer surprised me.
"First I see stars, then I don't feel good, and then I'm really tired. But that's not the worst part about it. The hardest part is when people laugh at you."
Indeed, something has to be done about the ignorance of people out there about epilepsy! It's amazing to me that a 21-pound girl who has seizures can scare so many people! There is so much more to Kayla, and more to her life, than her seizures. People's ignorance—I've been asked what I did to cause Kayla to develop epilepsy!!—can take its toll.
Luckily, the Epilepsy Association has been there for me every step of the way. When Kayla started losing her hair on Depakene, and when her behaviour changed on Frisium, Épilepsie Mauricie Centre du Québec was there to listen and inform me what was (and was not) normal. And when I was troubled by people's reactions, I called the Epilepsy Association to unload. It's a safe outlet where I can say anything I have on my heart without feeling judged. More than anyone else, the people who have understood me the most have been from the Epilepsy Association.
Every seizure Kayla has, I say to myself "that's the last seizure she'll ever have." Of course, there's always another seizure to burst my bubble. But I never fail to be heartened by Kayla's own strength and determination.
KAYLA with ANDY AYOTTE,
a Past President of the Canadian Epilepsy Alliance
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