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Real-Life Rip Van Winkle

Kids with rare sleep disorder sleep for weeks at a time

This story was originally published in Current Science, a publication of Weekly Reader Corporation.

Every now and then, Ted Bigatel falls asleep and doesn’t wake up for a week. He sleeps all day and night, waking only slightly to eat and go to the bathroom. Even then, Ted isn’t really awake. "I’m kind of in a fog," the 15-year-old from Allentown, Pennsylvania, told Current Science recently. "It’s like I’m walking around the house but I don’t live there."
Taryn Sardis, an 18-year-old from Corte Madera, California, experiences similar episodes every few months. Hers last about 10 days.
Stephen Maier, a 27-year-old from San Jose, California, has had these strange sleep episodes since he was 13. Maier recalled his first: "I was sleeping on the couch and my parents couldn’t wake me up." The episode lasted two weeks. Once or twice a year since then, Stephen experiences a 2-week-long episode of almost nonstop sleep.

All three individuals have a rare condition called Kleine-Levin syndrome (KLS). People with KLS periodically experience an overpowering urge to sleep, usually for days or weeks at a time. Doctors aren’t sure what causes KLS but think viruses may play a key role.

Long-Term Knockout

KLS usually strikes during the teen years and may disappear completely during early adulthood. Only a few hundred people in the United States are known to have the disorder. Ted Bigatel is typical of many teens with it.

Ted was knocked unconscious during a baseball game last spring. "Three weeks later," he explained, "I started acting funny. I didn’t want to eat. I wanted to sleep all the time."

Ted slept for 7 days. Then he woke up, becoming alert and fully awake almost as suddenly as he had fallen asleep. Three weeks later, it happened again, and again, the episode lasted 7 days.

Ted’s personality also changed during the episodes. "My parents said I’m usually a really nice kid," Ted said, "but now I was totally mean to everybody. I didn’t want to do anything. I didn’t want to be around anybody. All I wanted to do was sleep."

Irritability is common in kids with KLS, say experts, as is excessive eating. Stephen Maier, whose parents started a foundation for people with KLS (www.klsfoundation.org), commonly gains 2.3 to 4.5 kg (5 to 10 lb) during an episode.

Brain Barrier Breaks Down

Waking up from a sleep episode occurs suddenly, making it sometimes difficult for classmates and teachers to understand. "You’re sick," said Stephen, "and then you’re not sick. There’s no in-between."

According to Neil Farber, a molecular biologist and father of two sons with KLS, an infection or a head injury may bring on the first attack.

Dr. Farber thinks an infection or blow to the head might open the blood-brain barrier. The blood-brain barrier is a layer of cells lining the brain’s smallest blood vessels.

The body’s tiniest blood vessels, called capillaries, normally allow sugar, proteins, and other substances to pass easily from blood into body cells. Capillaries inside the brain, however, contain a layer of cells so tightly packed that possibly harmful substances can’t pass through.

Virus May Enter Brain

Infection, injury, some drugs, extreme fatigue, and extreme physical activity can cause a temporary opening of the blood-brain barrier. Dr. Farber thinks that in some teens, the opening allows a virus of some kind to enter the brain.

The virus, which may not cause health problems otherwise, may then infect the brain and damage an area called the hypothalamus. The hypothalamus controls sleep and appetite, two functions that go haywire in people with KLS. No effective treatment for KLS exists, though doctors can use a number of drugs to help prevent sleep episodes.

Taryn Sardis is determined to take her KLS in stride. Said Taryn recently, "I just have to deal with it one day at a time."