The KLS Project
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An Introduction to Kleine Levin Syndrome

My son’s greatest challenge every day is waking up. Kleine Levin Syndrome (KLS) changed my family’s life. Kleine Levin Syndrome is a poorly understood disease that’s marked by recurring episodic symptoms of hypersomnia, derealization and mood changes that are not yet fully explained. What that really means for our family is that I’ve been speaking to doctors about the possibility of KLS, progressively moving towards a diagnosis for my son

Avner strapped in for the hospital ride

Hoping for a miracle at the Hospital

Barbara and I woke early Friday morning. We had taken a gamble on my hunch, based on an article I had found on the internet. The day before had been an unqualified disaster. Avner destroyed personal possessions, taken a stab at ruining his most important friendship and scared us as his parents. We chose between calling for emergency services to have him involuntarily committed or going with the hope that

Avner's trashed bedroom

Paying the High Price of Hesitation

Avner’s pediatrician finally saw a small part of what we had been experiencing and suggested that we take him to the local hospital emergency department. Like frogs in a slowly warming pan of water, daily exposure to Avner’s changes of mood and affect had failed to make the impression that urgent action was required. Instead, I continued searching for the perfect solution instead of the immediately available one. Kleine Levin

Avner sleeping on the doctor's exam table.

Lost Without a Map to Get Diagnosed

I stumbled into a description of Kleine Levin Syndrome almost as if by divine providence. I suggested to our family therapist that Avner’s extreme behavior problems might be directly related to sleep, instead of sleep being a response to another primary behavioral problem. When he suggested that we pursue that possibility, I started looking for an explanation. It seems odd to me now that I was looking for a medical

Avner, passed out on the sofa

Visitation Rights, KLS Haiku #3

The third poem in a series from 2017 explores that feeling that KLS takes our own children from us and leaves us to care for someone who isn’t quite the child that was there before. Parents of children with Kleine Levin Syndrome express this sentiment in conversation and our online support group.