KLS Support UK - Helping families affected by Kleine-Levin Syndrome

Ben's KLS Story

Ben is the youngest of 3 brothers so by the time he started to be ill we thought we were experienced parents. Ben had a history of ear, nose and throat infections as a toddler and also stomach upsets but nothing major. He was and still is an energetic, sporty, fun, funny, bright, sociable boy.

In 2004 when he was 8, he started to experience bad headaches which affected his vision and also to sleepwalk in the evenings. He was treated with antibiotics for sinus infections, had nasal washout and adenoids removed and was treated for allergies.

For a year he seemed fine other than the usual boy injuries from skiing, basketball and football -maybe a few more in his case due to his hypermobility.

Then in March 2007, he was knocked out in a Sunday league football match. He slept a lot the week after but seemed to bounce back.

That October, he started to complain about severe headaches again and the sleepwalking increased. He was also sleeping till 12:30pm every day and nothing we did would wake him: alarm clock, telephone, Hoover, burglar alarm, music or a light alarm. He was also getting stomach problems, which were put down to the headache medication and antibiotics.

He was well until February when the headaches returned and no medication would shift them. By March 2008, he was “sleepwalking” during the day and we couldn’t tell whether he was asleep or awake. He was eating whole tubs of chocolate ice-cream in the middle of the night and not remembering a thing. He was exhausted, light-headed, dizzy and sweaty with freezing cold hands and feet. He had black rings under his eyes, the whites of his eyes were yellow and he had a blank expression. His whole body hurt. He didn’t have the energy to do anything other than watch the same television episodes over and over again. He did not want friends or even family to see him. We knew something was very wrong.

With the help of our GP we tried desperately to find out what was wrong. By May, he had seen 9 specialists including two sleep specialists, a neurologist, a gastroenterologist, two ENT specialists, a rheumatologist and an allergy specialist. He had undergone EEGs, sleep studies, MRIs, CT scans, endoscopy and various blood tests. We were also advised to try physiotherapy, acupuncture, shiatsu massages and cranial osteopathy but nothing relieved the headaches or improved his sleep patterns. Nobody was linking the sleep, the headaches and other unusual behaviour, such as the food cravings and mechanical eating in his sleep. He was missing huge amounts of school and when he was at school, he was writing and remembering nothing. Everything was fuzzy and he was becoming agitated about small things, which would not usually affect him.

Then at the end of May, overnight, Ben was back and claiming he felt better than he had since October. His life resumed: socialising, football, running, tennis and school. He was up before 7 and one of the first at school and busily revising (or in his case first time learning) for exams.

In September 2008, he had a throat infection and the headaches, sleepwalking and exhaustion returned. More blood tests were run, more visits made to specialists and high Streptococcus levels were discovered. Further antibiotics were prescribed and Ben was referred to an immunologist. He was also referred for further sleep tests, which unfortunately took place in October when he was well.

By late February 2009, following skiing, Ben’s headaches and sleepwalking had returned and he was off school. In March, his infected tonsils were removed. The headaches, exhaustion, sleepwalking and sleeping till lunchtime continued. We were still trying to send him to school for the afternoons as advised but the child who loved school and his friends could not get there and when he managed to, could not concentrate. He was also referred to a psychologist for pain management of the headaches. She said ‘despite his exhaustion and the stresses of prolonged health concerns, [he] maintained a sense of humour and optimism’.

An exclusion diet was also tried. He was off wheat, dairy, sugar, caffeine and his favourite food – chocolate. This seemed to work and we thought Ben was cured. Ben was so well for the next 8 months that when the time came to see Professor Paul Gringras (thankfully on the recommendation of Dr Adelaida Martinez who was the first to believe the link between the headaches and sleep), we were going to cancel the appointment. We are very pleased we did not. Within a few minutes of hearing about Ben’s symptoms, we had a diagnosis of Kleine-Levin Syndrome (KLS). That same day, we had the support of the KLS Foundation.

Ben went into an episode of KLS in February 2010 from which he woke 5 months later in June. His next episode, again 5 months, started on 11th December 2010 and he came out on 20th May 2011 in time to sit 1 of his 9 GCSEs. During these episodes, knowing it was KLS, we knew Ben had to stay at home, in bed for as long as he needed, eating and drinking sensibly and regularly, without visits from friends and family with one of his parents or brothers with him at all times. We know during an episode he is confused and does not know what is reality.

We are beginning to recognise the signs of him going into an episode: he starts to exercise more, particularly long runs, to ward off the feeling of tiredness; he deactivates his Facebook; goes to bed early and craves sugary food. We are also thrilled to recognise when he is coming out: he tells us the headache is lifting, a day later he is sick and has an upset stomach, and then he has his first proper night sleep in the five months, sleeping for most of the day and night and wakes saying “I feel better than I have done in months. What have I missed?” We now know from the last episode that he remembers very little from the time he is in an episode including this time choosing and buying a dog that he was so desperate for as he went into his episode.

We are still not sure what triggers his episodes although he had flu-like symptoms a few weeks before each episode and the episodes seemed to coincide with the start of the cold weather. In between episodes he keeps off chocolate and caffeine as they do seem to affect his energy.

Thanks to Professor Gringras, the KLS Foundation and now the support of the other families of KLS Support UK and the KLS Facebook community, we know how to manage Ben’s KLS and most importantly we know he will come out of an episode no matter how long it lasts and get back to living life to the full.

If you have a KLS case history, diary, artwork, poem or anything else you would like to share, please let us know.
Contact Us