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?!  :-P 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 :-)

Hello Sunshine (I had to smile just typing that!)

Nice to meet you!  I’m Jillian and I don’t have KLS but my son does.  He’s 7.  And I agree, you have to feel sorry for those with no sense of humor.  I get a lot of people telling me, “How can you be so happy when your kid has so many issues?”  Well, if I didn’t find the humor in it and sometimes crack or joke or two I would be miserable….and then he would be miserable….and the chain goes on.  We’ve had rude comments from strangers and when it’s rude enough, I fire back with some snarky remark.  It doesn’t happen often but when it does, it’s warranted.  This past December Tyler had an ambulatory EEG and we were eating lunch in Dennys when an older woman kept pointing and making little comments about my kid and his looks.  Of course he didn’t look normal…his head was covered in gauze and there were wires sticking out and he was attached to a bag with his little machine.  The lady got a surprise when she was staring at him and he looked her straight in the eye, smiled and said, “Take a picture, it lasts longer!”  She got red and left as fast as she could.  Another one of our favorites is when he has a seizure in public and people ask me, “How can you let your child behave like that in public?”  It’s always followed with a smile and “So idiots like you can ask dumb questions about it!  We like to see how others react!”  Again, not polite but sometimes you have to do what you have to do to get through the day.

I’ve been birdwatching the last few weeks.  http://sanjose.granicus.com/MediaPlayer.php?publish_id=91 
They’re baby falcons that hatched on Earth Day.  I’ve been watching them since right before they hatched and have seen them grow into the big white fluff balls they are today.  They’re just getting into their “toddler” years and testing out their feet and wings.  They’re going to band them next week so that should be interesting to watch.  Be careful…it’s addicting :)

:cheese: Hi !!!!! I am SO GLAD you posted !!!! THANK YOU for SAYING HI !!!!!!!!!! .... I was waiting for a KLS-free clear day to reply, but I think it’s taking too long to come about, so I’ll just reply today instead. Pardon my confusion please. I type easier than I talk. IT IS SOOOO NICE TO MEET YOU!!!!!!

It is a sunny day today. There are blue jays on my fence and baby squirrells outside. I LOVE BABY SQUIRRELS !!!!!!!!! And baby birds that look like they are wearing yellow lipstick.

THANK YOU FOR BEING SO KIND!!!!

GOD BLESS YOU! HUGS AND KISSES,
SUNSHINE4TULLIP

I want to watch some baby squirrels!  That would be fun.  We don’t get many baby anythings around here…except stray baby cats that potty all over our lawn and spray on our porch. 

It is very sunny today…too sunny.  The temps have been triple digits for a few days and I feel like I am going to melt.  We’ve been doing a lot of swimming and while the boys are getting a nice shade of brown, I’ve been getting a nice shade of red. 

No worries about being confusing or not.  I’m confusing on a normal basis and I don’t even have KLS!  I don’t have an exucse…except that I am a big goof.

Hope you’re having a great day!

Hello Shunshine,

I have read Your intro and feeling great sympathy with You.
My spouse was diagnosed with kls years ago ...and Your story sounds so familiar in many respects when I recall her weird narratives.
I have been wondering how similar are lots of people suffering from this syndrome…

It’s beautiful You can rely on such a being of strength…cannot say it about myself.

Take care. Kind regards,
O.S.
Bohemia, Europe

Hey guys i went to the doctors when my episodes started they said it was migrane, they carreid on occuring and i went back to see a different doctor he did not know what it was so he referred me to a padeatrician and he didnt know he has done more tests they are all clear and i have had scans and epilepsy tests so my padeatrician said that it could be something un heard of then he researched more and he came across kls he said it wasnt defonate he then spoke to other doctors and professors and tehy all agreed it was kls i have not had a full episode for about 2 months or so now but i am still worried that i am going to be doing something without my mum (who i find hard to seperate from) just incase an episode occurs.i have days where i eat and dont feel full up and i cannot help it.during an episode i loose all my speech as if im drunk or something i sometimes shake seveerly as if im having a fit it horrible for me amd people surrounding me.i often cant walk or do anything for my self during an episode it can last from 1 day to about 2 months its awful and i have only been diagnosed nearly a month now i am finding it a bit hard to deal woth and i have lots of questions and feel like i am different to everyone my family and friends are very supportive.in a way i think its great having kls beacause im rare i know it sounds silly but i think its just mixed feelings.does anyone have any suggestions on how to deal with kls?
thanks Sarah

SARAH - 03 February 2009 08:14 AM

Hey guys i went to the doctors when my episodes started they said it was migrane,

My daughter actually did have migraines already (diagnosed at age 2), so when this started to happen, we knew they were different. The pediatrician said it had to be mono but the blood test was negative, so she said it HAD to be viral. The next time it happened, again it was assumed mono. Again negative. The next time again, negative, but the doctor said, we may as well call it mono… which sure did appease the teachers at school as an excuse for missing yet another FOUR WEEKS of school!!

She was already missing plenty of school because of her migraines!

She is now 21 and has not had a migraine in about 19 months and is off meds for it after they put her on CoQ10 (supplement for mitochondrial function).

-Naomi