My first episode was when I was 17 years old on New years day 2002. My diagnosis was determined in the year 2004. I self diagnosed myself with some research. Then went to a sleep doctor in La Jolla, California he then did confirm I had KLS. I was given meds but nothing worked.

I basically had episodes on and off every 2-3 months and was sleeping for 20+ hours a day I had hallucinations and was very emotional also was very very hungry for carbs especially sweet cereals! Episodes lasted about 2+ weeks with “peaking” during my episode around the 8-10th day. I found out after I was diagnosed that I seemed to be able to accept my episodes better because I had an answer of what was wrong with me.

I have been kind of episode free for almost 2 years now. I have found that I may have had some “mini” episodes during this time which means they have lasted for only 2-4 days but that I can still function in society. Maybe only once or twice a year during that time. I think I might be growing out of them. But I would like to ask someone who has been episode free for sometime if they found that the episodes were less severe then eventually had none.

Thank you
Ryan

My grandson was diagnosed with KLS in 2006 following a lengthy sleep episode.  Getting the right care for him is a bit of a problem since so few doctors know about KLS or how to treat it.  The doctor who helped in my grandson’s case is a psychologist who had studied KLS and was able to inform our neurologist who apologized for not having the information about it over the long period of his care. 

Now we are looking for a doctor in our area who is knowledgeable about KLS.  A neurologist and nephrologist would be appreciated.

Thank you
Vanella for Miles

Our son Max who is now 15 years and was diagnosed with KLS in December of 2007 and has 5 epsisodes.  My husband and I had to be very proactive with all the physicians we encountered and like many of you, went through a parade of doctors.

With that being said....I wanted to direct you to some steps you may take to get quicker actions in regards to your child’s IEP or 504.  You, of course, need to get a letter from your physician documenting your child has KLS and a copy from the web site that provides your rights and explains what KLS is.  Your next step is to check and see what child advocates (if any) are available in your county...we have them here in Florida...and you can get the number from the district office.

If you do not have advocates then you need to Google Wrights Law...which is a wealth of knowledge of Special Education Law and Advocacy.  Compile your information and request a Child Study meeting (that’s what it is called in Florida)..bring your advocate with you if you have one.  Make copies of your medical documentation etc. and provide copies for all present in meeting.  Present yourself as a highly organized parent.  At the completion of the first meeting you need to begin your paper trail and email the appropriate person to go over the details of the meeting and what changes you desire.  You continue to email after each phone call, meeting, conversation in a school hallway etc. 

Do not give up and stay consistent and focused to your objectives. I tell parent groups all the time that you are your child’s lifeline to achieve their best educational
opportunities.  It does not matter if they roll their eyes at you each time you enter a meeting ...you must keep your hand to the plow.  It is federal mandated law
and it is your legal right to fight in the most constructive way possible.

If you continue and are not satifsfied take your paper trail of emails and schedule a meeting with your school board/and or superintendent.  If necessary seek legal counsel.  If they continue to dig in (which does happen) your final step is to go to the media.  That is your last resort...and I have seen major turn arounds after media coverage.

I have been teaching for 28 years and presently am teaching in my sons high school.  Max has had an IEP since second grade...he is dyslexic like me and I have had to fight for his rights for a very long time.  This is a new fork in his journey and I have already begun to prepare...just in case…

I hope this helps some of you...the Wrights Law web site is an incredible help with lots of links and excellent advice.

Remember not to give up...be strong and go forth!!!!!

Gail in Florida

I kept questioning the cycles with all the doctors, of which they had no explanation. After researching I compiled a packet for our neurologist.  He agreed to read them and agreed that without a doubt this is what Max has.  (We had already gone through giving him KEPPRA from which he had a severe reaction.) Our doctor is now working closely with us and we have his full support.

My husband and I have decided no more meds.

I have several questions for all of you. Do any of you begin your cycles with your only symptom is that your eyes are extremly dry?  Have you found that your short term memory is “shot” during your episodes?  Do the memory issues flow over to when you are awake?  Have you been able to continue with school?

Are any of you aware of any DVD’s available about KLS? 

Are any of you living in Florida?

I look forward to getting to know you all.

Gail in Florida

So, since I am just overweight I apologize for wasting everyone’s time.  Thanks.

Hi! How is everyone?

I’m Sunshine4tullip. I’m 37. I’ve had KLS for, maybe 26 years. Since I was 11 or 12. I was diagnosed in 2005. Before that, we just assumed it was some Mystery Illness.

DURING EPISODES:  It impairs my thinking greatly. It also effects my speech, balance, motor skills. Sometimes I sleep A LOT. It’s VERY hard to wake up. Sometimes I’ll walk through days in a sleepy state, where I’m awake,but it FEELS like I’m asleep. Other times I can not get to sleep. There are times when I am ravenously hungry. My stomache hurts badly because I ate so much,.... but, funny, I am still hungry.

During episodes of KLS, strangers have assumed I was either very drunk, on drugs, severely mentally disabled, or all three. (i know this because sometimes the occaisonal rude person will comment or stare. Mercifully, most of the time I don’t percieve it...but, if people are mean-spirited, that’s THIER problem.

You have to feel sorry for people with no sense of humor, right? How FUN can thier life be, with no compassion or humor?!  They must be bored out of thier minds!

NOT during episodes of KLS: I am...’normal’, for lack of a better word.

When I am well, I enjoy painting, working out, good movies and books, spending time with friends & family. I sell the occaisional painting. Once in a blue moon, since KLS has gotten so much worse. I am on dissability. My mom and I are best friends. She takes care of me when I need help. I’m Christian, and I find great comfort and friendship in God. I LOVE BIRDWATCHING and nature !

THIS PHOTO is ME and MY MOM, BFF (best friends forever!!!!)

Nothing else to say about me I guess. Nice to meet you all !

Love,
Sunshine4tullip