My name is Debbie and my son was just diagnosed with KLS in August, we live in New Jersey. He has been sick for the past two years. He had a history of a childhood epilepsy which he outgrew. His episodes last for approximately 10 days. He sleeps for 2-3 days for most of the day, is arousable and then goes back to sleep. After several days he becomes agitated and very sensitive to light and very withdrawn, he feels “detached”. The first episode he could not distinguish reality from a dream. The doctors thought this was a psychiatric problem and tried several meds. for brief psychotic episodes. He is now taking tegretol, amantidine and vitamin D and a very low dose of abilify. He has had six episodes in total, two of which were this summer. Once the episode ends he resumes his life as if a light switch turns on and off. The last couple of days he is visibly depressed that this has happened. He just started college and is very anxious. He filed for disability should an episode occur. I would like to know if there are any parents who can talk to me about their child’s college experience. Perhaps you can offer suggestions to alleviate my sons anxiety as well as my husbands and mine.

My son Ross and I are from a very small town about 2 hours south of Seattle Washington.  We both have or have had KLS.

hello out there. this is emily im 16 years old and i have been having episodes for about 2 years. i live in michigan with my family. i go to high school and am in 11th grade.

this is such a wonderful idea.  Thank you all for introducing yourselves.
I am a Mom of two adults children.  Both had KLS throughout adolescence and young adult lives.  I live in MA. where they received medical care for KLS.

Hi my name is Tessina, I am 22 years old, I’ve had KLS since 2003 and I came on here to meet people who are also living with this strange disorder. I feel a little relieved to come on here and see that other people are living under the same condition as I am. I suddenly don’t feel so alone anymore. E-mail me if you would like to chat, .(JavaScript must be enabled to view this email address)
I hope you are all doing well!

Welcome Tessiina.  It is comforting to know that you are not alone in the struggles you face as a KLS patient.  I hope that the responses and support you get is helpful.

My name is Elise. I am from Alberta, Canada. My son Ben is 16 and was diagnosed with KLS on December 20, 2010. He has now had 4 episodes lasting 6-10 days. He only has 9-14 days off in between episodes and is missing a lot of school, work and sports.

Has anyone else had episodes so close together? From what I am reading, most episodes are only 2-4 per year, lasting 8-20 days.

Also, I am wondering if anyone has tried co enzyme Q10? This is something new our doctor has recommended.

It has been hard to get information as this is so rare, very little is known about it. It is a huge relief to find this website for information and someone else who knows something about the syndrome to communicate with.

Thank you

Dear Elise,

Welcome to our web site.  I hope that the postings in Forum and the articles in the other sections of the web site help you gather more information about KLS.  Often KLS starts with a vengeance and episodes do occur one right after the other for a period of time.  This pattern seems to change after the first year or so when the episodes lessen and occur further apart. 

KLS is still a rare disorder and physicians sometimes suggest a medication that is not harmful for no other reason that they don’t like to stand by and do nothing.  Q10 is an anti oxidant.  There is no evidence that anti oxidants will help with KLS.

I hope your son gets a break!

Elise,
I Haven’t had KLS for too long, but this past Summer I was having episodes every couple weeks lasting anywhere from 7-14 days.  November 24 was when my last episode ended.  I have not had one since…and hope not to for a while.  Keep your head up…  if it helps any…I have been tried on many medications (Ritalin, Provigil, Nuvigil, Gabatentin, Carbmazeapine, etc) and nothing helped…Carbmazeapine made it worse.  Doctor was going to try Lithium, but decided not to.  I now am not on a single medication for KLS and doing better on nothing.  I still have many questions about KLS myself…have read A LOT of material and am in the medical field.

Dear Dancing RT8:
I am so glad to hear that you haven’t had an episode since Nov. 24.  That is great news for all KLS patients.  Ben’s first episode was Nov. 16/2010.  Our doctor did try Adderall first as well and he did not respond well to it.  Extreme mood changes, stayed awake, but was a complete zombie throughout.  We have agreed not to try it again, and the Q10 is just to try to improve brain function.  It is primarily a med for maintaining healthy cardiovascular function, but is also for brain function according to our doctor and pharmacist.  We will try it, as it can’t hurt.

Thank you to both you and the administrator for response to my post.  It is very comforting to have others with info regarding this.

Here’s hoping that we can band together to fight this disease one step at a time.  Thanks everyone!
Elise

MY WIFE IS A PATINET OF KLS AND SHE IS FROM KARACHI PAKISTAN.DIAGNOSED KLS IN 2003

Hi Everyone I’m from Wellington New Zealand and have suffered from KLS for 20 years

Hi all!  It’s nice to have a website where experiences and information can be shared.  We live in kentucky and my son was diagnosed two years ago.  He is currently having an episode.  He was given provigil at the onset of this episode.  I’m not sure if he is having a shorter episode then usual or if the medicine is helping him, but he is awake enough to drink and drink so we can take care of him at home.  He is in his second year of college and i am so glad he decided to go.  He has shared his illness with his classmates and they have rallied around him.  When i arrived at the hospital last monday night, i found my son sleeping with five other friends dozing in chairs and on the floor.  If you chose the right school, college may still be an option. He chose a small university that is within a 2 hour drive which may make things easier.  He will probably miss finals next week but we’ll cross that bridge when we have to.