Former CV Student with Rare Sleep Syndrome Appears on TV Show
A teenager, whose family recently moved from Scott Township, suffers from a rare and debilitating disease, causing her to go into long periods of deep sleep and lethargy.
Vicki Delien recalls one holiday season when her now 17-year-old daughter Nicole missed Thanksgiving, Christmas and New Year's Eve.
The West Allegheny High School student, who suffers from the rare neurological disorder Kleine-Levin Syndrome, slept through the holidays, awaking one day in January when she finally opened Christmas gifts alongside her family.
Delien said her family has grappled with her daughter's debilitating condition, sometimes called "Sleeping Beauty Syndrome," which causes Nicole to periodically fall asleep for days or weeks at a time.
"She's never really adjusted to it," Delien said. "She's 17 now and it really upsets her. She's missed out on a lot."
Nicole's family used to live in Scott Township and she was a student in the Chartiers Valley School District.
At the age of 6, Nicole began experiencing the symptoms of Kleine-Levin Syndrome: She would fall into deep sleeps for days at a time. Her family would be unable to rouse her, Delien said.
"We heard it was viral, epilepsy, West Nile, she was just doing it for attention," Delien said. "It took us 25 months to land a diagnosis."
The illness is characterized by recurring bouts of excessive sleep, punctuated by periods of confusion, lethargy, depression and overly emotional behavior.
The cause of Kleine-Levin Syndrome is not known. Delien said stress can trigger a sleeping episode: Nicole last fell into a deep sleep in February, after the family moved from Scott Township to Oakdale.
Delien said the syndrome has upheaved her daugther's young life—causing her to miss long periods of school, extracurricular activities and family vacations. Prior to her diagnosis, someone concerned by Nicole’s persistent drowsiness reported the family to child protective services.
The hibernation-like states have spanned as long as 64 days, during which time Nicole is unable to care for herself and requires constant supervision, Delien said.
"She'll just be completely out of it," Delien said. "She will be completely asleep for about 19 hours a day. She will get up, but she'll be like a zombie, like she's sleep walking. And she tends to just go to the refrigerator and take out whatever she's craving."
The Delien family appeared Tuesday on the nationally syndicated talk show The Jeff Probst Show, where discussed Nicole's struggle with the illness.
Watch a clip of the Delien family's appearance here.
Delien said the family hopes to raise awareness of the disease, or perhaps start a Pittsburgh-area support group for Kleine-Levin sufferers.
She said they hope to reach out to other families in Western Pennsylvania who suspect their child may have the illness.
"We've been through everything with this illness," Delien said. "There are others who need to be made aware that this is a disorder that is out there. It's a true sleep disorder that exists and people who have it need help."
The family was whisked to Los Angeles last week to film the episode for the show, hosted by the Survivor television personality. The episode spotlights families dealing with unusual medical conditions.
The show will feature a home video of Nicole, filmed the year that she dozed from Thanksgiving to New Year's.
Delien said her daughter awakes from episodes with no recollection that time has elapsed. The girl's grandfather passed away during one of her slumber episodes, leaving her family to break the news to her after she awoke.
"She only knows what happens to her when we tell her," Delien said. "She has no clue what has happened (while she is asleep) and she has no clue that she's been out of it for that long."
Some Kleine-Levin patients can experience a remission. Delien said her daughter is now being treated with epilepsy and narcolepsy medication. The treatment, coupled with a strict regular sleeping regimen, has helped keep the illness at bay—Nicole now suffers from sleeping episodes twice a year.
"She's just a normal kid," Delien said. "She's a very happy, bubbly teenage girl who enjoys everything and tries to be happy. When she goes into an episode it just tears everything apart."
Mary Corso
7:27 pm on Wednesday, November 14, 2012
There is hope. My daughter suffered from this terrible disorder for about 5 years. It was a nightmare. It started to improve in her first year of college, but very gradually. It was amazing that she made it through that year. Today, my beautiful, determined, and amazing daughter is in her 3rd year of medical school, doing very well. There is hope!
M Urquhart
12:27 pm on Tuesday, November 20, 2012
My daughter currently has KLS, and it took us a little over two years to get an accurate diagnosis as well. She's 18 and still has fairly frequent episodes that can last months. We live in Crawford County, Pennsylvania and would love to join a support group in a relatively close area such as around Pittsburgh.
Nan Harbison
11:42 am on Friday, November 23, 2012
Well, I suppose if you haven't approved my message by now, you have just deleted it. I do hope you could pass on the information I left here to Nicole's family. How nice that would be for her to get over her sleepiness. Do you have the right to make the decision for her, and dismiss what I said without asking? If you doubt the patches I sell, please google Lifewave patches and pain or sleep. THOUSANDS of people all over the world are using these patches and getting relief. Nan Harbison info@patchpotential.com.
Nan Harbison
11:58 am on Friday, November 23, 2012
I don't know what happened to my first comment on this article. I thought it was deleted of course. I have patches that might help with sleepiness.The patches do NOT have drugs in them, they have organic crystals in them, and when they are applied to the body (on acupuncture points) the heat of the body causes them to send wavelengths of energy into the body to do specific. One of the kinds of patches balanced melatonin and serotonin. Others are for pain, increasing energy, healing and antiaging. A brain balancing protocol might help as well. I think it's worth a try. What has Nicole got to lose trying it? The patches are completely safe.