Inside Out – Kleine Levin Syndrome – Sleeping Beauty Disease in Teenagers

Published on Nov  5, 2012 by

Toby Foster meets the teenager who spends much of his life asleep. Mitchell has the rare condition of Kleine Levin Syndrome (KLS) – a rare sleeping and behavior disorder which is episodic and robs teenagers of their time, my own son is also has KLS – he is a year younger than Mitchell and slept for over half of the last year.

More information on KLS can be found on my web site – along with a leaflet which I have designed, approved by my consultant to help promote understanding of this horrible condition.

Our KLS journey so far

My son began to sleep more in August 2011. He was 13 years old and we were on holiday, at first we thought he banged his head and had concussion,  but he was not right for a long time afterwards, and the Autumn was a long difficult battle trying to find out what was wrong. He was in episode for nearly 4 months. In December he was diagnosed with Kleine Levin Syndrome (KLS) he was still in this episode – he came out of it just before Christmas 2012, he had no memory of anything since the summer.

Those first four months saw us fighting an unknown battle, our son was sleeping excessively, always exhausted and operating in a dream… he was unable to do some things but had an incredible memory – it was like he was overloading his mind with data. Some people were suggesting he was just a lazy teenager but it was so much more. We saw our GP, a neurologist, psychiatrist, visited a private clinic in Harley Street, had various tests and were being passed from pillar to post with our “interesting case” that no one recognised and we were getting more and more desperate as parents. He was finally diagnosed by letter – we had wrote a detailed letter about his condition – all the signs and symptoms the doctors were just not getting, and this letter landed on a desk of a fantastic paediatrician who read it, and recognised the symptoms from a conference she had attended in the year – what we described was  not in the text book, but was KLS – a week later we saw her, had a provisional diagnoses and  shortly after that our first episode ended… our son was surprised to realise it was Christmas, we celebrated together and then he went into his second episode before New Year – practically confirming the episodic nature of the condition.

I have started this page a year on – it is August 2012. My son has an extreme case of KLS – he has had 15 episodes in his first year, they have varied in length from half a day to 4 months. He has missed 180.5 days, 12.5 days have been “foggy” and he has had 171 good days where life has gone on. He is in year 9 at school – is on a revised timetable and despite only spending 78 days in school (most of them half days) he has actually caught up with his main subjects.

Click here for more information.

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