Hi.  My son has had 5 KLS episodes in the past 14 months.  He was diagnosed after the fourth episode.  He will be 15 next month.  His episodes typically last 6-7 days, although one episode lasted 11 days.

We’ve noticed that each episode is preceded by a lot of physical activity at a time when he is not drinking much fluids (or has been drinking caffeinated beverages…possibly a dehydrator).  I know that many of you have identified triggers.  I’m wondering if avoiding the triggers has helped you to avoid the episodes.  In other words, has anyone successfully “ended” KLS by religiously avoiding the triggers?

During this most recent episode we tried to give him lots of fluids once he said that he felt an episode coming on and throughout the episode.  Although the total episode lasted the same amount of time he found that he wasn’t as “fuzzy” during his awake periods this time and he remembered what happened during the episode once it was over.

Also, my son has always been high energy and distractable but with hard work he did well in school.  It was never suggested to us that he might be ADD/ADHD.  After the 2nd episode he began high school (a very demanding school with longer than normal days).  For the first time we were being told that he couldn’t sit through the day and was disruptive in class.  Is it possible that the KLS caused him to have ADD/ADHD (or is it possible that it aggravated something that previously was mild and now was too much for him to control)?

Interestingly, when they began to treat the KLS he was initially given a stimulant that is normally used for ADD/ADHD (Concerta).  My son came home after one day on the medicine and thought he had the best day of the year.  He was able to sit through classes and everything that was being taught was suddenly more interesting.  Subsequently the medicine caused him to be super hyper as it was wearing off so for the summer we have him off it and he’s been delightful.  We do have an appt to have him evaluated for ADD/ADHD but I’m interested to know if the KLS may be playing a roll in this.

Additionally, after his most recent episode (last week), after the sleepiness and “fuzziness” had worn off, he went through several days during which he was really extra calm, totally himself in all other ways, but calm.  He described it as feeling unmotivated.  But to us it just seemed relaxed, pleasant, considerate. 

Has anyone else seen behavior changes after individual episodes, or behavior changes since the KLS began?

Thanks so much for your input.

Hi,

    I am 18 years old and have had KLS since I was 13 years old.  Believe it or not, I am actually in an episode right now.  The first episode I ever had was by far the worst.  I experienced something almost like hallucinations, feeling kind of like I was the one controlling things around me.  Each year my KLS still seemed to trigger itself—mainly by becoming overtired, stress, or a cold/flu—but would seem to get a little better.  I would be awake longer.  Like I said before I am in an episode now,  I have noticed that I am able to communicate well online but confrontations in person are uncomfortable to me.  They seem “unreal”.  There is no way that in my first couple episodes I would have been able to be writing emails, chatting online with friends, and managing so stay awake longer.  I am still not able to work or attend school during my episodes, and still feel very uncomfortable in social situations, but the severity seems to be lessening as time goes on.

Hope this helps :)

I hope this episode ends soon for you ... but I’m glad that they seem to be getting milder as time goes by.  It’s great that you are able to be in touch via the internet even during an episode.

I’m curious.  How many episodes do you usually have per year?  And, after how many episodes did you notice that they started getting milder?

I usually have about 3 per year.  They each seem to last about 2 weeks at most.  We noticed them becoming less severe last year, but that was after I was diagnosed (I went on for four years without a proper diagnosis!), so prior to that we didn’t know what we were dealing with!

We never noticed anything that was a trigger for the episodes.

At first they were rare 3-week long episodes. But then they became shorter but more and more frequent. She now has them rarely again, and they only last 1-2 days. She hasn’t had one in quite a while. They began when she was 10 and she is now almost 22.