Hi all I’m Siri. I had KLS from age 14 until 22. I am now 48. I was never formally diagnosed, just met a lot of doctors and was repeatedly told it was a “viral syndrome”. My son Ross started displaying symptoms at age 13. The first one was thought to be mono, but the test was negative. Subsequent episodes were thought to be illicit drug use due to the “spaciness” ( all tests negative). When the episodes became more frequent we got a referral to Children’s Hospital in Seattle Washington.  At times we were there weekly so they could compare his symptoms both in one and out of an episode. Despite all the tests and observation we left there with the diagnosis of growth spurts! My son is very slender (then about 140, now about 180) but reached the height of 6’5” very quickly. I knew there was more to it than that but felt pretty helpless.

About 2 years ago a co-worker saw the Sleeping Beauty program and knew it sounded like what Ross was going through. I read and watched everything I could find about it, then I cried. It finally had a name!
Ross was symptom free from age 17 to 21, until he had a serious relationship end badly. This triggered a heavy episode that lasted about 2+ weeks. He is now 23 and had been symptom free until about 10 days ago. Ross is getting married on 10/10/10. We hope.

Just a little update.  Ross was well enough to go through with his wedding and has now returned from the honeymoon and back to his regular happy and fun self.

Siri -  glad to hear that Ross was able to make his wedding.  Certainly (as always) hope that will be his last episode.  Question on your episodes as compared to his - what was the level of similarity of the symptoms?

Hi Stephen,

  We are very hopeful this was Ross’s last episode but were told today that the company he works for closed the store he worked in.  I’m concerned about the stress triggering another episode so will watch him closely.

  My symptoms were very similar to Ross’s that’s why it seemed so familiar when he started experiencing episodes but we didn’t have a name to help the doctor.  Our episodes are/were usually about 3 weeks long.  We kind of ease our way into them.  The first week is fairly functional but more quiet and needing to go to bed earlier.  The second week is the worst, with constant sleeping.  Ross always has an appetite but not excessive.  I would have no appetite, nor did I want to take in any fluids during the second week.  Ross doesn’t experience the hypersexuality either.  The third week the fog starts to lift a little more each day but still feel the dream-like, altered reality state.  I was fortunate that mine were not very frequent (maybe 1 a year) and I didn’t have to give up any sports like Ross has.  Ross however has had them more frequently (often just finishing one and another comes along) and tends to get a little irritable. I was very passive.  Ross gets confused easily and you have to repeat yourself many times when trying to talk to him.  I do remember looking at words written on a wipe off board and not understanding them if I tried to return to school too soon.  Ross is normally our family comedian (very Jim Carey like) so it’s very obvious when he is affected.  I’m more shy so no one saw a lot of it.  I’m positive Ross’s last 2 episodes were stress related but not the majority of the previous ones.  We have been requested to remove him from activities he loved because he couldn’t contribute like sports and 4-H.  I also don’t remember him being ill before the first one.  Ross has always been extremely healthy.  I may have been ill before my first episode as I had severe asthma while growing up.

  I did send an e-mail to Tom Rico at Stanford right after you contacted me but have not gotten a reply.  Ross and I are both willing to help in any way we can.

  Siri