You Haven’t Heard?

You haven’t heard from me in a while. I’m sorry but so much has changed that I haven’t had a chance to let everyone know what’s happening in our lives.

It’s been about a year since Barbara and I suspected that there may be something seriously wrong with our son. The first signs looked like a very troubled young man trying to cope with growing up. Young people have challenges today that we never faced as kids. We knew that we had a good kid but he didn’t seem to be acting that way. We told ourselves that it’s just adolescence.

Life got more confusing and fewer things made sense. We first suspected mental illness but that wasn’t the case. Finally, I said to one of our son’s doctor’s that something about the way he slept bothered me.

One night while reading about sleep disorders I stumbled on a very strange disease you haven’t heard of, called Kleine Levin Syndrome (KLS). It was so strange that I could barely believe such a disease could be real, yet we had seen almost every symptom. It explained why our son had been turning the thermostat very cold and opening windows on the coldest days of winter. It explained why he said that he didn’t remember things and it explained why we couldn’t wake him in the morning.

We took our son to the hospital about a year ago in February 2017. The emergency room staff witnessed his violent sleep behavior and saw the boy we knew when he woke up. That first hospital visit began the journey that still continues.

I didn’t mean to ignore anyone. I have been very busy every day, fighting this cruel disease which steals the youth from it’s victims. By the time many KLS patients reach adulthood, they have been asleep for years more than their peers.

No one knows the direct cause of KLS. Medical research currently believes the body develops an autoimmune reaction to a virus. That autoimmune reaction attacks parts of the patient’s brain, which causes them to sleep too long (hypersomnia) and to show many unusual behaviors. KLS is episodic, which means that the long sleep (our son sleeps up to 19 hours at a time) and strange behavior goes away, then it comes back again.

No known treatment exists for KLS. A handful of drugs show promise at this point, but they work for less than half of the people with the disease. We count ourselves lucky that those drugs seem to work for our son.

The story is far from over. The struggle with doctors, insurance, the school system continues. However, we see continued progress.

Some of you haven’t heard from me, though you should have. I’m sorry about that. I have been largely absent from my own business. Barbara has taken a position with one of our clients, mostly to cover medical costs and insurance. I am trying to attend to business and to our son. I think things will get better, but right now I continue to work at prioritizing every crisis of every moment of the day.

I should probably apologize to each person who feels ignored because they haven’t heard from me. I thought this might cover some of that need, under the circumstances.

I continue trying to improve. I’m sorry that I can’t do more right now, but please understand that I just can’t do more. I am getting a little more time back in the office as our son continues to get through the worst parts of KLS. He has returned to school after a year without grades. Hopefully, you will hear more from me in the near future.

If you want to learn more about KLS or if you would like to support research into this very rare sleep condition, you can look at these websites.

The KLS Foundation

If you have read this far, thank you so very much. This is why you haven’t heard from me.

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