My son who is 15 has been in an episode that is different from the past two he has had. While he is more awake more, he is completely nonresponsive. He can’t stand to have anyone sit near him. He has extreme food cravings for which he is very demanding, wanting specific junk food.  He refuses to verbalize other than when he is asking for food.  However, he has two friends come over and he changed dramatically and was conversant with them.  Can anyone explain this?

I had active episodes from the time I was 13 to 28.  I have now been episode free for the last 8+ years.  The lighter more lucide episodes were worse in many ways for me.  I was lucid enough to know that I was in an episode and what I was missing and how “out of control” I was in terms of not being able to focus, think clearly and control my actions.

The lack of inhibitions clearly shows in with food as you no longer care what is good for you or not good for you in large quantities and only care about eating your favorite foods/satifying the current craving.  I was very specific about food requests as well.

In terms of the change in behavior, this is common as well.  I would “get up” ( I am told) for visits to doctors or when certain friends would come by.  With family you dont feel like you need to try to hide that you are sick, but with strangers/some friends I would perk up to be “almost normal” - my parents would say if they did not know me well they would think I was a bit out of it but would not expect that I was in an episode.  This effort of focusing so hard to try to hide I was ill I can remmeber as being incredibly tiring and my parents would confirm that after a dr appt or friends visit I would usually “crash” and sleep for a long time.  For me it was similar at the beginning of an episode when (especially for the earlier ones) I would try to “fight it/hide it” as long as I could before giving into it.  I learned that this was not a good idea as I got older and wiser and realised that this was not safe or productive (like not really remembering driving to school for example and not being able to let anyone know that I would be out for 2 weeks).  I realized it was better to use the 24 hours or so to get as prepared as possible to be out.

Anyway, the behavior you describle seems very typical based on my experience and my discussions with other patients during the last few years.

Thank you for this insight.  It was so helpful to us.  Sometimes it is very hard not take his attitude/demeanor personally.  I would love for my son to meet others who have KLS.  I hope the foundation will contemplate an event that would serve this purpose. Did any medications help you?  We have a neurologist who claims he has had good success with depakote with another child who suffers from KLS.

Steve -

Thanks for your comments about how it was for you when you were younger.  Your Mom’s diary was tremendously helpful when I first found your website, but how different to hear it from your perspective!  What you wrote about the effort to keep going, hide it, etc. resonates with me because that is how I remember my earlier experiences.  Have you written your own diary?  Thanks again!  joly

Sheila - glad I could provide some insight.  The Foundation is actually in the process of organizing an event for the summer of 2011 (wish it could be sooner but will take that long to organize and hopefully will allow more people to plan for the trip out to CA).  We should be posting some information shortly with more to follow as details are worked out.

Joly - I have not written a diary.  I have thought about gathering various posts and email responses I have written over the years into a more comprehensive Q&A but it remains on my to do list.

Sounds good.  Maybe the Maier family could be the keynote speakers in 2011 ... have heard almost nothing about how it was for Dad & sibs.  j