Editor's note: Kleine-Levin Syndrome mostly affects teen boys, causing them to sleep up to 20 hours a day during episodes that can last weeks. It’s rare, possibly affecting one person in a million, with a higher incidence among Jewish people. There is no definitive cause or treatment. Jenny Grossman, 47, of Livingston, New Jersey, says her oldest son, Cooper, who is now 17, was diagnosed with KLS two years ago. She shared her family’s story with TODAY.
There’s nothing beautiful about “Sleeping Beauty Disorder,” as some call it. Cooper has had five episodes since his diagnosis. During an episode, he sleeps 20 hours a day. The episodes usually last for three weeks where he’s basically lost in a hypnotic coma state — he has no clue what’s going on around him. We just let him sleep.
When he’s awake during an episode, he’s either eating excessively or watching a show he’s watched 50,000 times in the past. He becomes extremely agitated if you suggest everyday tasks like brushing his teeth. Simple things will just set him off, where he’s normally the most polite, kind, respectful child one could hope for. He’s missed about 60 school days because of this since freshman year.
Between episodes, he’s completely himself.
Right now, he’s in his longest stretch of being healthy — a year and six months since his last episode — which is the best gift anyone could ever ask for.
The problems started in February 2017. He had the flu and then everything went downhill. The flu took its normal course and two weeks later we were heading to Florida. The night before, he went to a hockey game and he called me and said, “Mom come get me, I don’t feel well, I feel tired.”
He went to sleep around 7 o’clock. The next morning, he was still tired as we headed to the airport. Normally, he has tons of energy, loves children and loves to talk with people. But he was not acting himself.
He slept on the entire flight. In Florida, normally when he saw my mom and dad, he’d run into their arms, we’d go to the pool and we’d have to drag him out to come home for dinner. But this time, he basically slept while we were having a family vacation without him. Every time I attempted to wake him, he would look at me and say, "Mom, I’m too tired."
We took him to the hospital and they checked him out and said, “Nothing is wrong with your child.”
Somehow, by the grace of God, we got him home from Florida to New Jersey. At this point, he was in the thick of an episode. We were thinking maybe it was a brain tumor. Something was causing my child to act in a way we’ve never seen before: When he wasn’t sleeping, he was becoming defiant and he was completely not himself.
They checked him out in the emergency room. He was angry and agitated; he was sleeping 20 out of 24 hours a day. He was completely a different human being.
They ended up admitting him to the ICU where every test imaginable was performed: a spinal tap, CT scans, MRIs. There was no infectious disease, no meningitis, nothing that could be altering his behavior.
After a few days, the doctors said, “There’s nothing more we can do for your child — he needs to go to the next hospital,” basically meaning a mental institution because he was out of his mind at this point.
My sister-in-law read on the internet that based on all the symptoms Cooper was having, there’s this thing called Kleine-Levin Syndrome. I’d never heard of it.
The average diagnosis time takes about four years. We are one of the lucky ones: We were able to see a specialist at New York University within weeks. Once you’ve had a diagnosis, it’s not the answer to your prayers, but it definitely alleviates all the unknowns that you’re dealing with.
People who don’t know what’s going on in the KLS families’ world think that these people are lazy or joking or on drugs. There are patients out there who don’t have access to doctors who have even heard of KLS, which is mind-boggling to me.
My son is happy, healthy, energetic, loves life, wants to go out with his friends, doesn’t want to go to sleep, like a normal teenage child.
But during the KLS episodes, his brain is stuck in a weird circadian rhythm where he’s locked in this weird world. He just physically can't stay awake. He can’t differentiate real things from surreal things. His brain is in a craving-sleep mode. When he wakes up from an episode, he basically has no memory of what transpired.
Our doctor suggested two medications for Cooper. Not everyone is treating KLS the same way because there's no protocol that this works.
Some patients have outgrown KLS after about 10 years, but there’s no given. I’ll keep my faith and hope that he’ll outgrow it. It’s a hard way to live because you hold your breath — you start to see him yawn and you say, “Oh my God, is it happening?” When Cooper is not well, I don’t leave my house.
When he’s well, he somehow has the strength and desire to jump back into everyday life. He’s able to do that with the support of his friends and family. Every day he’s well, we treat it as a gift.
For more information about the disorder, visit the Kleine-Levin Syndrome Foundation.