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 on the makeshift stretcher

Going Downhill

Rural Georgia is no place to have a medical emergency on a weekend. The only hospital is small. The emergency staff was sparse and equipment was minimal. The first task after providing insurance information and identification was getting someone to offload Avner from the bus onto a gurney.

Me dressed as a pirate

Blindsided

This night owl stuff had to stop. Not only wasn’t Avner waking in the morning. He was potentially violent when we tried to wake him. He would lash out with hands or if someone was at his feet, he would kick. At the same time, it was evident that Avner was waking at night to eat. Sometimes, he would deny it. We would find plates and bowls under his bed, along with sport drink bottles. On one occasion, he even drank most of a bottle of maple syrup.

our wrecked van

The Camporee

As we got closer to home, a car in front of us stopped to wait for a break in oncoming traffic. I stopped a safe distance behind. Seconds later, the rear windshield exploded, showering everyone with glass.

Barbara illuminated by flashlight

Hurricane Hermine

Being unfamiliar with hurricanes, my great grandfather and my grandmother’s brother, John went into the store to see what damage there was. The eye of the storm passed over Miami while they were still in the store. Realizing that the winds were too strong to simply walk back to the car, Abe took his six year old son under one arm and held a concrete block in the other hand as ballast, to stay anchored to the ground. That’s how he made his way back to his family.

Jonathan and Avner in Scout uniforms with OA Brotherhood sashes

Warming Up for the Inevitable

Avner had previously encountered an ADHD medication “generic equivalent” that gave him extreme side effects. The reaction was so violent that we filed a report with the FDA about the medication. Apparently several other patients had enough problems that the medication was removed from the list of generic equivalents for Concerta (a longer acting form of the same medication in Ritalin).