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kls - our story leaflet & downloads news stories & videos fundraising for kls uk treatment & research questions & answers life after kls episodes contact us about kls what is kleine levin syndrome (kls)? recurrent hypersomnia is a disorder characterized by recurrent episodes of hypersomnia that typically occur weeks or months apart . more details can be read on this extract from the icsd. how to sum up kls in a couple of words - that is impossible .. " kleine-levin syndrome (kls) is a rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world. the disorder strikes adolescents primarily but can occur in younger children and adults. at the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), sometimes waking only to eat or go to the bathroom. each episode lasts days, weeks or months during which time all normal daily activities stop. individuals are not able to care for themselves or attend school and work. in between episodes, those with kls appear to be in perfect health with no evidence of behavioral or physical dysfunction. kls episodes may continue for 10 years or more. kls is sometimes referred to in the media as “sleeping beauty” syndrome." kls foundation but this short video by tomo news - does a great job... our journey so far with kleine levin syndrome 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. 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 2011, he had no memory of anything since the summer. this is our journey - i have updated this page as time has gone on with information on getting help in school, exams, driving, jake's doctor's, fundraising and more.... as well as creating other pages within the site of useful resources... please read our story, if you have kls please get in touch and if we can help in anyway or answer any questions we would love to try... 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, p sychiatrist , 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 recognises 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 it, and this letter landed on a desk of a fantastic paediatrician who read it, and recognised the symptoms from a conference she had attended a month earlier - 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, he no longer had a bunk bed and we celebrated together and then he went into his second episode before new year - practically confirming the episodic nature of the condition. in january we had cognitive testing done - a neuro pschology assessment. he did the first episode when he was "normal" and then i managed to get him reviewed again 7 and 8 days later whilst in episode. i remember sitting in through the in episode assessments, knowing my son could not answer those questions, and then to go back and collect a 19 page report on him, and to be told they don't know what our next steps are. a statement from the report explains: "the wisc-iv demonstrated a drastic reduction in jacob’s intellectual functioning when he was in an episode as compared to when he was not in an episode. jacob’s average range performance when in episode declined to a performance in the extremely low range. when jacob is functioning at this level, his ability to understand or learn new verbal or visually based information will be extremely limited. he is not able to hold information in his mind while he makes use of it and his pace of work is extremely slow." i have started this page a year after kls started - it is august 2012. i wanted there to be more information about kls available to the public, and more support to other parents like myself to be available. my son has an extreme case of kleine levin syndrome - 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. the chart below shows my son's first year. we found showing his kleine levin syndrome episodes in this form was really helpful to us and jake's doctors - red is a kls episode, orange we are not sure (we now know this as extreme tiredness, with us but not quite) and we usually keep him off regular activities and school, and green is "normal". it is based on traffic lights - red - jake's live is on hold, we are waiting... and green we are busy living life and making the most of it. if you want to make your own chart you can download the kls chart file here (opens in excel 2007 or higher) november 2012 - we are through the first year and jake's episodes are getting more frequent again - some kls families (we have got in touch with some through kls support uk) appear to have a time of year that is worse than the rest of the year.... we are in year 10 - gcse's and so far have only been at school 15 days prior to half term, we are worried about the future as we have heard some kleine levin syndrome patients fail their gcse's and there is no option to retake so we are starting early.... this is what we have discussed so far to see if it will help. there is one chance to take your gcse - if you miss the exam, or one part of 2 exams - he will not pass, may have to retake but not with school - they say goodbye... and this may mean studying a whole new syllabus. information on special circumstances can be found here. if we are worse in the autumn (evidence says it is worse in winter 2012 - an update in 2014 states no evidence of season variation has been found (miglis, 2014)) - then we need to plan for this - he will miss mocks etc... practice papers, and chunks of work - school are supportive and he gets caught up on work - once caught up sometimes he goes into lessons and sometimes he works ahead - we have currently dropped 2 subjects... languages as we missed so much last year, and english literature at schools recommendation. although jake loves reading. documentation is important - every time we are in episode i record the dates, every half term our gp writes to school explaining his absences - this gives a medical trail of his episodes so we have evidence of the episodic nature of the condition. but currently as it stands unless jake has completed 50% of the work they can not predict his grade, which means if he works hard, catches up and misses the exams of an 100% exam course he will fail. if it is part coursework/exam we have a chance - but he has to be in school to achieve that... and with 2/3rds of year 9 missed, and year 10 following a similar path it looks unlikely. mid november 2012 - we have started taking iron and vitamin d supplements in addition to our multi vitamins, in the hope that this improves this

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