Our lives have been turned upside down by Kleine Levin Syndrome (KLS).

KLS is hard. It can affect any age or sex but mostly strikes young men in their teens. Here’s what I wish you could comprehend about our lives:

• My kid isn’t reluctant to wake up. He can’t. It’s not just being a teenager. It’s not lazy. He’s sleeping away most of his life, his opportunities, and his friendships.
• No. No. No, you don’t wish you could sleep like that. I’ve measured as many as 19 hours of sleep at a time. He goes months unable to wake for more than 10 hours a day, often as few as 6 or 8 hours. Worse yet, even if he’s awake, he suffers sleep drunkenness for most of his waking hours.
• Derealization is even worse than sleeping. It turns even the precious few waking hours into a nightmare, unable to distinguish waking from dreaming. It can be accompanied with hallucinations and cognitive changes.
• My kid has a gifted IQ and a vocabulary that makes him sound years older, but this disease will take it away, leaving him like a small child, only to give it back and leaving a giant blank spot in his memory for days.
• Don’t suggest medical treatment or alternative medicine or home remedies. I walked away from my decades old business to do nothing but care for my kid and read medical research. Here’s the bottom line. Sleep is one of the most complex under studied functions of the brain. It is part of, or intricately entangled with memory. If you can’t talk about the role of GABA and GABA agonists in the context of wakefulness and their behavioral consequences, you shouldn’t even start that conversation.
• Medical marijuana may be great for treating a host of modern ills but it’s Russian roulette for my kid. Several documented cases of KLS are directly attributed to use of alcohol and marijuana.
• Stimulants help some people to stay awake but frequently cause aggression in KLS patients. If you think of sleep like engaging the brakes on the brain, stimulants are equivalent to gunning the engine. You might drive away but you still have the brakes on. Current research is focused on disengaging the brakes.
• My kid’s neurologist is one of two in the United States researching this disease. He’s the only doctor on this side of country. I live in Florida. To speak with any qualified researcher, I have a choice between a 5 hour drive to Atlanta or a flight to San Francisco. You probably don’t know more than me on this topic and certainly not more than the only two US labs studying the disorder.
• I have no clue how long this will last. The medical literature says an average of 8–10 years. We know of people in our support group going into their third decade.
• I have to believe that my kid will support himself and live independently. I have to prepare for the possibility that it might not be possible. Don’t tell me I’m pushing too hard or being too lax. I have to adjust my approach to parenting every day and sometimes change course in the same day.
• Your (and my) 24 hour circadian rhythm and the schedule we keep, has no bearing on what my kid needs and when he needs it. Just accept that my reality is very different than yours.
• No, I can’t tell you when he’s going to be well again. I feel lucky just to know that he will be well again. I also know it probably won’t last forever.
• When you say that you can’t imagine what it must be like, I’ll tell you, “that’s right.”
• I can’t take advantage of traditional respite care. If my child is well, he’s very independent. If he’s deep in episode, there are very few people I can trust to watch after him, for their safety and his.
• As I wrote this, my kid slept until nearly 4:00 pm after going to bed about 11:00 pm. My wife has traveled to care for her aging parents and we had to cancel our plans for the entire family to visit my in-laws. This is how it works. I travel. My wife travels or we all go, with the assumption that one parent may need to be a caregiver.
• One of my most anxious moments was on a tour bus in San Francisco (just after the last KLS Foundation conference). It was getting close to our (early) dinner time. We didn’t have a car and we were staying in an Air B&B across town. My son turned to me and said, “I’m really tired.” My mind raced to figure out logistically how to move an adult sized child who was unconscious from Downtown San Francisco to a residential neighborhood on the outskirts of the city. We got lucky. A little food helped him last until we got back to our room, but it could have gone another way entirely.
• Four years after the first episode, it still feels like we are living in a Twilight Zone episode. Life looks almost normal except we live with the knowledge that it can completely come off the rails at any time with the words, “I feel tired.” I won’t know if I’ll have my kid or the monster that inhabits his body if he falls into that deep sleep.
• I tell people that KLS is a strange disease that affects the entire family. The kids can’t wake up and the parents never sleep soundly again.
• They call it Sleeping Beauty Syndrome. Screw that. Rip Van Winkle is more like it. In that story, the character slept for decades only to find his world had changed and he couldn’t fit in. That’s how this feels.

In spite of everything else here. I know my kid will finish Eagle Scout and his GED. He dropped out of high school at 16 because there was no way for the local school to accommodate his condition and provide instructor contact. He will probably start college before his 17th birthday. He will also take a very low course load and take his time.

It’s going to be a lot of hard work. We had almost a year of improvement before his last episode disrupted the school year for the 3rd consecutive year. I think he’s coming around again. I know that because his case is rather severe, that he will stumble again and my wife and I will be there to catch him, as many times as it takes.

Update:

After fighting the local county schools for 3 years, our child withdrew from high school to take the GED. In 10 months of testing (because our child is a minor and students under 18 are required to take extra practice tests) our child completed the GED successfully and earned a diploma. The last grade they completed was 8th grade.

Today, my child completed enrollment as a community college student. They passed all placement tests so that no remedial courses are required. Today we have a ray of hope.

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