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
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
the second poem of a series of poems that I wrote in 2017 following my son’s diagnosis with Kleine Levin Syndrome. Imagine, that something as simple as a yawn could strike terror in your heart. Each yawn telegraphed to me that we would lose Avner to sleep again and we never knew if he would be back as himself or The Monster that occupied his body during episodes.