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
The hospital Avner moved from emergency to the pediatric floor on that Friday afternoon. Avner arrived at the hospital early in the morning after a difficult evening, still asleep and unable to cooperate, nonverbal and resisting attempts to examine him.
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 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
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
One night, as we watched tv on our living room sofa, I found something different than all the results for narcolepsy. It was a Wikipedia article about a very strange disorder called Kleine Levin Syndrome.