McMaster University

McMaster University

Real life sleeping beauty seeks cure

The Hamilton Spectator
Joanna Frketich
August 24, 2012

Kaitlyn Terrana is a real-life sleeping beauty.

But there is no cure for the neurological disorder that steals weeks of the 17-year-old Winona girl’s life.

It took two years and multiple misdiagnoses before a doctor at McMaster Children’s Hospital finally solved why Terrana goes for more than a week at a time, sleeping round the clock or acting like she’s “a walking zombie.”

It’s a rare disorder called Kleine-Levin syndrome (KLS) that affects one in one million teens and young adults. It’s more unusual in girls as 70 per cent of patients are boys.

“This is so rare that there is not enough awareness,” said Terrana. “I just want other people to not have to wait (for a diagnosis) like I did. I was so worried. It felt like I was drugged up and blacking out.”

The Grade 12 student at Cardinal Newman Catholic Secondary and her mother Kathy Terrana want to find others with the syndrome because they are desperately searching for what triggers the episodes, which last around 10 days and happen about every six weeks.

Medicine has no explanation for what causes the sudden onset of the syndrome. There is no treatment to ward off episodes or lessen their impact. And no one knows why it typically stops after eight to 12 years.

Terrana’s mother has been keeping a meticulous log of what happens in her daughter’s life immediately before an episode, recording everything from food to stresses to activities. She’s even kept track of the cycle of the moon. She wants to compare her log with the experiences of others to see if there is any common thread.

“I’m trying to find what causes it,” said her mother. “I want to talk to other patients to find out what’s going on in their lives before they have episodes.”

Terrana would also like to form a support group with other Canadians with KLS. The closest foundation is in the United States.

The lack of awareness in Canada, even among medical professionals, meant Terrana spent two years taking unnecessary medications and going through a battery of tests.

It started suddenly when she was 15 years old in October 2010. She was exhausted all the time and acting so strangely, teachers called her parents to express concern. The consistent honour student saw her marks drop 15 per cent. And she was binge-eating junk food.

She walked in front of a car without seeming to notice, went to the bus stop hours early and stopped talking to her mother. She showed no emotion when her older sister was in a car accident.

“I was zoned out,” said Terrana. “I went to school and wrote tests that I don’t remember writing. Half the test was blank — and I never leave questions blank — and I doodled in the graphs.”

At first, her mother and health professionals thought she was depressed.

“I knew something was wrong but I didn’t know what,” said her mother. “I’d say: ‘Get up. It will make you feel better. You can do it.’”

Next she was diagnosed with having seizures after going through a long list of tests. She was given medication that was constantly changed or upped because it wasn’t working.

“She wasn’t getting any better,” said her mother. “They were just pumping more drugs into her.”

Finally, she saw pediatric neurologist David Callen at McMaster Children’s Hospital. He diagnosed KLS in June. There are no tests for the syndrome but Terrana matches almost all the symptoms.

“One of the most challenging things is that it’s commonly misdiagnosed,” he said. “These patients are worked up for a number of years before someone thinks of this as a diagnosis. The vast majority of family doctors and pediatricians aren’t familiar with it.”

Callen says the syndrome can be devastating because it disrupts a critical decade in young people’s lives when they are in school, forming relationships and starting careers.

“It’s very difficult,” he said. “It’s formative years.”

Terrana can’t be left alone when she’s in an episode. She’ll typically sleep around the clock for the first four days. Her mother has to wake her to make her eat and drink.

By about the fifth day, she’ll wake up but her mother describes her as being like a zombie. She just sits doing nothing for hours on end. She doesn’t communicate or show any emotion.

Gradually she starts minimally communicating and finally, after about 10 days, she snaps back to normal. When she comes out of it, Terrana has no memory of the episode. It’s like she went to sleep and woke up 10 days later.

“She’s missed so many things,” says her mom. “She missed her last two birthdays. She has no recollection of them at all.”

Terrana struggles to live a normal life despite her illness. She’s still an honour student, constantly having to play catchup. She has a part-time job, volunteers at Hamilton General Hospital and takes part in extracurricular activities at school.

She dreams of going to McMaster University next year and pursuing a medical career, possibly in mental health care.

She also wants to find answers to her own illness.

“It’s very frustrating,” says her mom. “We want to do anything we can to help with the research.”

905-526-3349 | @Jfrketich

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