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The University of Chicago Medicine - Comer Children's Hospital

Young Girl Regains Happiness After Proper Treatment for Narcolepsy

When Annie Watson was six years old, she started falling asleep while eating. She fell asleep while practicing the piano, riding to school, and playing soccer. She fell asleep watching her beloved Packers in the Super Bowl, in a house full of people yelling at the television.

Regis Watson thought her daughter had mono, but the tests were negative. She asked her pediatrician to test Annie's blood for leukemia, but the doctor told Watson that she was crazy and to leave the girl alone. She was just growing, he said. But Annie had always been an energetic and bright child who never took naps. Now she was sleeping 16 hours a day.

Worried that Annie had an endocrine or breathing disorder, Watson took her to an ear, nose and throat specialist. He took out Annie's tonsils and adenoids, to no effect. Now seven years old, she was sleeping all the time, and was ornery and obstinate when she was awake.

After a year of confusing and contradictory medical advice, Annie saw David Gozal, MD, a leading expert in the treatment of pediatric sleep disorders. He asked Annie's mother to keep a careful diary of when she fell asleep and when she woke up. And he asked her to videotape Annie at home, so he could see one of her sleep attacks in action.

Watson gave Gozal a tape of Annie sitting at the kitchen table, working on her math homework. Mid pencil stroke, her eyes closed and her head slumped. She woke up in time to catch herself from falling off the chair, less than a second later. Then, angry and confused, Annie started crying.

Gozal sent Annie to the sleep lab, where she could be observed throughout the night and at naptimes. Nurses attached electrodes to her head to record her brain activity. Before they had left the room and returned to their monitors, Annie had already fallen into a deep REM sleep.

Gozal diagnosed Annie with narcolepsy, a serious nervous system disorder that comes from a lack of a hypocretin in the brain. It's one of the chemicals that regulate wakefulness and REM sleep. "Narcolepsy in children is under diagnosed," Gozal said. Pediatricians often don't suspect it because a child's sleeping patterns vary in their stages of growth. But the disorder can disrupt a child's development and happiness. Gozal has seen narcolepsy in babies. He has published his research on the best methods and medications for treating narcolepsy in children.

Annie started taking medications to control her daytime sleepiness, and she is doing remarkably better. While narcolepsy can't be cured, the Watsons are determined to manage Annie's condition through her research-based medical treatment. Annie can now play an entire soccer game without falling asleep or collapsing into tears.

As her narcolepsy has become more manageable, Annie has become happier. The year of searching for a diagnosis took a toll on her whole family, and Annie's mother said it's a relief to be able to move forward. "I feel like if we had known from the start, she wouldn't have lost a year of being happy," Watson said. Annie is back to watching Packers' games on television--yelling at the players, yelling at the referees, and staying awake until the clock runs out.