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 When her teacher asked my 5-year-old daughter Kayla to draw a butterfly, the picture she made caused a lot of surprise. Kayla drew a syringe—a needle.
It took us some time to realize that a "butterfly" is also the name of the fine baby needles that doctors had often used on Kayla. "They hurt when they put them in my arm," she explained.
Kayla makes the doctors and nurses empty their pockets before letting them examine her, to be sure they're not carrying any butterflies!
The story of how Kayla became so well acquainted with doctors and their needles begins in 1995, the year she was born.
My husband and I are experienced parents— we have six children, including two we've adopted. When Kayla still wasn't rolling over at 7 months of age we knew that her development was delayed. She was an extremely tired infant who would fall backwards whenever we sat her up. On her first birthday she was admitted to hospital and assessed for a week, but the hospital staff couldn't tell us what was wrong with her.
At nearly two years of age Kayla was still a sleepy child who was not walking or talking. Then one day she fell back against the radiator at her day care centre (hitting her head so hard she developed a concussion), while at the same time wetting her pants. This the doctors recognized as an epileptic seizure.
To be honest, I was a little bit relieved to finally have the doctor's diagnosis of epilepsy. At least now there would be a protocol to follow to treat her, and we could take it from there!
Kayla was put on the antiepileptic drug Depakene, and it was as if she suddenly woke up. This sleepy child, who had only moved around on her bottom, suddenly started walking, climbing on couches, running everywhere! Her speech started to come too, but more slowly. Thing were looking up!
The seizures continued, though. First we tried adding on the antiepileptic drug Frisium (which gave Kayla behaviour problems) before finally settling on Tegretol. It was a bumpy time. The seizures improved, and Kayla's condition stabilized somewhat.
Then in February of 2000 things seemed to go suddenly backwards. Kayla became extremely groggy—she just couldn't seem to wake up.
"Things aren't going well in my head… Things are turning in my head," Kayla would say. "Help me get out of my head."
I drove my Kayla to the nearest hospital—we live in a rural Quebec community 45 minutes away. The hospital staff finally sent us home at 2 o'clock in the morning, telling me that my daughter probably had gastritis and prescribing Tempra to reduce her fever.
I didn't agree with this diagnosis. When Kayla was still groggy the next morning, I called her own pediatrician, whose instructions were clear: "Get her to a to a hospital right away."
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. 
KAYLA with ANDY AYOTTE,
President, Canadian Epilepsy Alliance
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.
Joan of Arc
 When France was invaded by England during the Hundred Years War, it was a young French girl acting on the "Voice of an Angel" who led her countrymen's military resistance. Called Joan of Arc, she was imprisoned, tried and put to death at the stake at the tender age of 19. The story of how this uneducated farmer's daughter, raised in harsh isolation in a remote village in medieval France, found the strength and resolution to alter the course of history has captured the public's imagination throughout the ages.
Based on Joan's own words and the contemporary descriptions of observers, researchers in the Department of Neurology of the University of California now believe that the Maid of Orleans had epilepsy. Her visions, the researchers suggest, could be seizures consisting of visual and auditory hallucinations, followed by a trance-like alteration of consciousness, implying a temporal lobe focus.
"I heard this Voice to my right, towards the Church; rarely do I hear it without its being accompanied also by a light. This light comes from the same side as the Voice."
Joan of Arc joins a host of other important historical figures suspected or known to have epilepsy.
"Talking about EPILEPSY..."
Vol. 5, No. 2, Pub. No: 172-5998
Published by:
Canadian Epilepsy Alliance / Alliance canadienne de l'épilepsie
Thanks to: GlaxoSmithKline
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