Hi
My son has been diagnosed recently.  I’m starting to see a relationship between going to school (odd—he’s an A/B student with a gaggle of great friends) and the sleeping.  Saturday he was just great but today, a sleep monster.  Can stress be a trigger for the hibernation?  Can the kids be using a hibernation as a form of avoidance?  I’m so confused and scared.

Hi.  I was in an A student in high school and assigned to an accelerated schedule.  This was in the late 50’s and early 60’s when the pressures on students were much simpler.  None the less, I ended by dropping out of high school (unheard of for successful students).  I could not control the lethergy and sleepyness.  Of course, the more classes I missed, the more I felt out of touch and the harder it was to return to school (there was no recognition of a need for special programs or at least no one in my family knew how to arrange one).

In short, KLS is responsible for your son’s hibernation.  My experience of the episodes (all the way back) is although I know I am behaving strangely, I cannot change it.  I could not “pull myself up by my bootstraps”, I could not stop being lazy, there was no amount of will power that would stop an episode.  Due to the then prevailing ignorance and silence about psychological conditions and unique family dynamics, my parents just didn’t know what to do.  Although I dropped out of high school, I did manage to thread my way through the symptoms and finish high school (night school) and eventually graduated from U.C. Santa Cruz with a BA in Politics.

I know you are scared and confused.  However, you and your son have a place to begin - a diagnosis.  In the meantime, and I know this sounds uncaring, but don’t panic.  All of my best to you and your son.

You know cstahle1, I just read your introduction and realize you are dealing with an injury.  My deepest sympathy.

stress for me was a major trigger.  often times, when I missed school because of an episode, I had to catch up but still keep up with the current classes, which was very stressful, which most often would put me back into another episode…  this has caused me to drop semester’s numerous times in high school (i graduated 2 years late becasue of this) and one semester from college so far.  But, when i was first diagnosed, I had seen a bunch of neurologists, they all said that KLS symptoms cannot be faked…  And for me especiallly, I’d wayyy rather be healthy and going to school than fall behind and be sick in bed, isolated for a week, my mind all foggy as well…  its just not fun.  hope things are going ok for you now

Stress has indeed been a trigger for my grandson.  His longest and most debilitating episode followed the death of his great grand mother.  I am certain that her death triggered the emotions of the earlier death of his father in 2002.  For many years, my grandson went misdiagnosed, however, our family were aware that something was going on with him that wasn’t being picked up by the doctors, particularly since the doctors were neurologists who were not familiar with KLS.  When my grandson. Miles, had an episode, it would not have been unusual for him to come to my home where he was stabilized, fed a vegetarian diet, put to sleep at a certain time and be quiet.  Now I can see that these environmental changes reduced his stress.  He does not have the language of stress, so, I have used pictures to help him identify what is going on with him.

Stress seemed to be a trigger for me, (alongside other things - late nights, alcohol, fever) but I think it cannot be put soley down to this and this is why I have gone on to try and live as normal life as possible, not shying away from things in case it brings on an episode.  My longest gap between episodes was almost 2 years and this was during the most stressful time of my life - in my 2nd and 3rd year at going out partying a lot, drinking and having the stress of finals but I never got an episode!  For me it seems to be a real special combination of factors that have to come together at a certain time that will trigger an episode and cannot put it down to one thing!

Nat
xxx