Hello

I am a mother, which daughter ( Sandra, 15 years ) just got the diagnose KLS   ( the first diagnose was: Confusional migraine ).
She is first person in Iceland with this diagnose.

She has now had 4 x 10 days of sleep, since Christmas 2008.
It seems like the tricker is every time we are going to travel. So now we will try to stay at home (Iceland) the rest of this year and see if it can help her. 

I would like to know if you know or heard about anybody with KLS in Denmark ( or other European Contries ) ?

Well, we will now sit down and read all the informations we can find about KLS.
- what a reliefe to see some of the videos, cause it is just like Sandra and now we know she is not alone !

Hope you are all doing well out there.

Lots of regards from Iceland

Lene

Hello Lene, my name is Simon I am 29 years old and I am from England. I got diagnosed with KLS last October, having had my fifth episode last year.
Sorry to hear your daughter has been diagnosed with this terrible illness. But your daughter is not alone!:) There are a few others in the UK who have suffered from KLS.
I personally have had 5 episodes to date, from May 2006 usually lasting 2 weeks with the usual symptoms, although last Sept I feel into a very long episode, which im currently still in now, 9 months on, I do not sleep as much as some other people with KLS although I do feel sleepy most of the day. I am now in a constant dream like state, with cognitive impairment, and some other less severe symptoms.

I hope you manage to contact others within your country who suffer from KLS, it will greatly help your daughter to cope with this illness, it has me.

Hope your daughter is well now, Best wishes

Simon

Masaleda - 26 June 2009 02:00 AM

I am a mother, which daughter ( Sandra, 15 years ) just got the diagnose KLS   ( the first diagnose was: Confusional migraine ).
She is first person in Iceland with this diagnose.

Interesting about the confusional migraine. My daughter had migraines diagnosed at 2 years old. She had many many different neurological manifestations, including confusional. She no longer has them.

She also had the diagnosis of schizophrenia (actually, schizoaffective but she no longer has those symptoms either).

We told the doctors that we thought everything was intertwined - we honestly could not tell the difference between the start of a sleep episode, start of a psychotic episode, or the start of a migraine.  Of course, to doctors they piecemeal everything, separating each out into different categories.