I am not totally new the KLS web site as I found it while researching what was wrong with my son. I am so pleased to see a forum has been set up. Where would we be without the internet!!!!!!

I have for a number of years, since his early teens, been pulling my hair out with my son David. His sleeping habits have ruined his life and not knowing what was wrong with him it has caused a number of auguments. He is a lovely lad, age 22 now and at long last it has been confirmed he has KLS. He is now on Tegrotol and seems much much brighter when he is awake but his sleep pattern is all to pot as he can’t get to sleep till the early hours and sleeps all day. But at least when he is awake he is not in a drunken trance like state. But it is early days he has only been on the treatment for just over a month. I found out all the information based on his symtoms and worked out it could only be KLS. I took this information to our GP and had a real fight to get him refered to a neurologist Dr Tidswell at Preston Royal Infirmary and Dr Tidswell refered my son to Dr Hackett at Hope Hospital Manchester. My GP was not at all happy that I had done his work for him and grudgingly gave us the referal but for epilepsy! He reckond he knew all about KLS!! So it was very satisfing proving him wrong.

So how many folk in the UK suffer this condition? Is it closely linked to bipolar depression as this really concerns me.

Looking forward to hearing from you folk

Beth x

Hi there,

We are not from the UK, but from Indiana. My 13 year old son was just diagnosed with KLS less than a month ago. I’m looking to chat with other moms and/or patients about their experiences, meds, advice, etc. I have been talking with a female patient from the UK, not sure if she’s on this website or not.

If you are interested in chatting, please let me know. My email address is .
Thanks, Tracy

Hi there Davesmom and Tracy,

I am recently new to the website as well. My son Steve was diagnosed in June of this year with KLS. His first episode was in April but we didn’t know then that it was KLS. We are from Canada and don’t know of any other Canadians but hope to find some in the near future. Steve’s episodes started at 6 weeks apart, then went to 4 wks. and then 3 wks. He has had 5 episodes since late April. He is currently on Lithium. What (if any) medications are you sons on? (If you don’t mind me asking.) How are your boys coping with School? Great to talk to other moms and know we are not alone in this fight. I look forward to many more chats.
Regards,
Bonnie Snow

Hi Bonnie,

First of all, I would be more than willing to continue to chat about KLS. My son was just diagnosed in August so I am always wandering how other parents are dealing/coping with it as well as how their child does. My son had his first episode in early February(2007) and is in his 10th episode as I type this. His episodes are typically 2 weeks apart and last around 7 days long. For whatever reason the 9th one lasted 12 days, I was freaking out! He is 13 and he is in the 8th grade. Thank God he is quick to catch up with work at school because he missed 35 days last semester and finished the school year with honor roll status for the entire year!! His school was really understanding of his missed days considering how well he finished the school year, however we know that can’t be the case this year. He’s already missed as many days as he’s been and so the counselor & I are going to chat about the best options for his education. These KLS kids are protected by laws when it comes to school & sports so there are several options. I’m not sure if you have simliar laws in Canada or not. I ended up quitting my job because of how often he was having these episodes and now I can be home at all times for him whenever and for our younger two kids(7&8;) too. Our son was put on Provigil only to take when he was in an episode. He tried it during the last episode and said he thought it made him feel worse, like he was dying and in a deep black hole so I won’t let him take that again!! Provigil is supposed to be a newer med for KLS patients with less side effects and less addicting than lithium or ritalin, etc. but I’m almost convinced we can ride out the episodes without any meds. I was originally under the impression that whatever med he’d be put on was going to bring him out of the episode so he can go to school & function normally but then I found out that’s not the case at all so why give our kids meds if they’re still going to be in the dreamy/sleepy/not on earth type of state of mind?? I’m hopefully going to get answers tomorrow. We have an appt. with his neurologist to discuss this topic. I would like to hear how the lithium has worked for your son and how old he is. I know meds work differently for everyone and that even with KLS all of the kids experience a little bit of different things in their episodes, so I do try to keep an open mind, especially still learning about it. Hopefully you got a chance to read the diaries on this website and watch the video blogs from Tanis. She is a Canadian and I’m sure you’ll find her to be very helpful with KLS. Well I sure hope to hear back and I’ll give you my personal email

Take care, Tracy

Hello folks
I hav’nt been on the sight for over a year due to being busy.
I just want to correct myself and say that my son is on Carbemazepine and has not had any big bad episodes. However he has what I call a rolling sleep pattern. For a week or so he can get up at 9am and go to bed at 9-10pm as the days go by he starts getting up later and later and going to bed later and later til he is asleep during the day and awake at night.He then rolls back round to being awake in the day ect.
This is not ideal but it is prefferable to his other pattern suffering insomnia and hypersomnia. He has now moved back home with me as he could not aford to stay in his own home. He has put on weight too as he still binges on high carb and junk foods. So I am just hoping that one day he will ‘grow out’ of the awrful condition.

I hope you are all keeping as well as possible
Beth