KLS Foundation Discussion Forum

My Strange Brain

2008-08-04T05:50:41-08:00

The UK Documentary My Strange Brain aired on 31st July 2008 - but for those of you not in the UK you can see it here -

http://demand.five.tv/watchnow.aspx

Hope it works -click on documentaries and it should come up - though not sure how long it is on there for.

Nat
xxx

Are there any KLS patients who are currently taking Provigil?

2007-08-23T06:39:31-08:00

My 13 year old son was just diagnosed with KLS about 2 weeks ago. He has episodes usually every 2 weeks and they last 7-8 days each. He has had 9 of them since the first one in February of this year(2007). We have learned not only the rarity of this syndrome but that my son’s results where ‘impressive’ from what the doctor said from the sleep study, which tells me it’s probably even more rare in his particular case. Anyway, my question is: Does anyone know of someone taking Provigil for this syndrome? I need to have some insight on how well it works, how long it takes to have somewhat ‘normal’ time during episodes, etc. I would like to have contact with any KLS patients and/or parents of KLS patients and/or doctors please.

This syndrome has been so hard for our family of 5 but super hard for my husband to understand and deal with.

I appreciate being able to come to a website like this and am looking forward in chatting with anyone interested.

Thank you, Tracy

KLS on Health Discovery Channel’s “Mystery ER” on Monday, July 28th

2008-07-25T15:26:56-08:00

Be sure to watch the dramatization of the real-life story of one of our KLS families who live in Simi Valley, near Los Angeles, CA. It will feature Brian and his parents, Cindy and Paul. It will air at 5pm, 8pm and 11pm (EST). Check your local listings for when it airs in your area.

Youtube videos on the hypothalamus.

2008-07-24T09:44:06-08:00

Hi all,
I found some interesting youtube videos describing the functions of the hypothalamus. They help to explain KLS symptoms. I found them very validating. Below are the links. You might need to copy and paste the links into your browser.

http://youtube.com/watch?v=PMrPlCDGUwo

http://youtube.com/watch?v=s1sZ47s8h_M

Hope all is well,
Alanna

Anyone seeing Dr. Mignot on the 9th?

2008-07-05T14:27:04-08:00

On Wednesday we will be traveling to Stanford to see Dr. Mignot. Seeing as he sees the KLS patients one day a month I was wondering if any of you will be going that day? Our appointment is at 9:30AM. It’s our first appointment and it’s one we’ve been waiting for for a long time! It would be nice to introduce my son, who is fairly young, to “someone else like him.” So...anyone going?

Coooperation with School/Teachers

2008-06-18T07:47:21-08:00

Does anyone have any experience to share with regard to cooperation from/with school and teachers? We had a very hard time getting teachers at our high school to create fair opportunities for make up exams, even though we have an IEP. Certain teachers looked for every loopole in the wording of the accommodations and did not really teach the content that was missed during KLS episode so this made it very difficult for everyone. Teachers gave zeros for exams he missed and this translated to “f” on a progress report when he had an “A” in the class pre-episode. I would like to know what kind of accommodations others have written in the IEP and also what attitudes you have encountered during implementation.

Secondarily, what have you experienced with return of short term memory and how does this play into the return to school?

Thanks and I look forward to your responses.
Gaylene

stress?

2008-05-05T05:25:27-08:00

Hi
My son has been diagnosed recently. I’m starting to see a relationship between going to school (odd--he’s an A/B student with a gaggle of great friends) and the sleeping. Saturday he was just great but today, a sleep monster. Can stress be a trigger for the hibernation? Can the kids be using a hibernation as a form of avoidance? I’m so confused and scared.

Sleepwakling / bathing

2008-05-21T12:48:26-08:00

Ack! Help! My heart has been in my stomach since this morning.

I got Tyler up for school this morning. Mind you, his room is upstairs and he has a loft bed. There are two ways to get down from his bed. 1. Jump 2. There is a slide coming off of it that he can slide down. (Yes, he’s got a really fun bed)

So we’re eating breakfast and he said, “Mom, I woke up in the tubby (Bath) in the middle of the night!” I said, “You had a dream about taking a bath?” He tells me, “No, I woke up in the tubby with the water on!” I said, “You’re clothes aren’t wet. You must have been dreaming.” He tells me when he woke up and realized that he was in the tubby and it was the middle of the night he got out, dried off, put his jammies back on and went back to bed. I wrote it off, again, to another vivid dream.

After I took him to school, I went upstairs to do some cleaning. Sure enough, the bathtub was full of lukewarm water and there was a wet towel on the floor.

My heart did a hop, skip and a jump into my stomach where it ran in circles for the next few hours. What if he had a seizure in the tub? What if he drowned? What if he fell off his bed? I can’t put a lock on the bathroom door because there are times when he has to get up and go potty at night and I would hate for him to have to run downstairs (Risking a fall down the stairs) to go potty in the half bath downstairs. Do I put a babygate along the tub blocking his access?

These last few days he has been very sleepy and I think he’s going to start an episode soon. I am trying to push him one more day as he is out of school for the summer after tomorrow.

Does anyone else with KLS sleepwalk? Is this a symptom? He’s sleptwalk (Is that a word?) but it’s been mostly harmless things he’s done. This? Not so much! I am usually up at all hours of the night watching him but last night I actually crashed and didn’t hear a thing, despite being right near the bathroom. Any suggestions? Comments? Answers? Ideas? Help!

BEFORE GETTING A DIAGNOSIS OF KLS, WERE ANY OF YOU MISDIAGNOSED AND IF SO, WITH WHICH DIAGNOSIS?

2008-05-03T18:32:57-08:00

I have been under the impression that I only had chronic fatigue and depression for many years. I just self-diagnosed myself less than 1 week ago with the KLS. Of course, until I went to a psychiatrist, my F.P.M.D. would say, “you just need to exercise more”. That seemed difficult when your muscles are actually weak from lying in bed so much. I have recently been making an attempt to lift light weights to build up my strength, during my remissions. I got validated more when I sought out a Psychiatrist for help. Now I would like to progress to a physician in my area or state, who is knowledgeable in this new KLS diagnosis? Where on this website can I find such information. Thanks! Donna

Happy Mother’s Day

2008-05-11T16:09:00-08:00

Just a quick note to wish all you Moms a wonderful Mother’s Day. Hopefully you are all being spoiled and pampered and enjoying YOUR day!

XOXO
Jillian