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

Elliot's KLS Story (in his mum's words)

Up until Elliot was unwell with a chest infection in January 2006, he had been largely clear of any illness save for 3 minor operations to insert grommets as a result of ear infections. He had, therefore, missed very little time from school.  Elliot was just 13 when he had this nasty chest infection.  Whilst he was unwell he had already started to behave slightly oddly, for example he would sing out loud to TV theme tunes, adverts, use inappropriate language and be generally very tactile and loving, wanting hugs and telling us he loved us and he started calling me Mummy again, it was almost like he had reverted back to be a very young boy.  He also hid some money in the lounge and denied all knowledge of it. 


Whilst we were worried about the chest infection we were more concerned about this change in behaviour, he was also sleeping a lot but that we put down to the infection. After 10 days or so Elliot was better and returned to being a normal 13 year old teenager, his personality and behaviour returned to normal, he had little recollection of his illness.  We decided it was a one off and not to worry. 


Unfortunately this was the start of what we later came to know as KLS episodes.  During the following months Elliot had further episodes lasting on average 9 days.  We took him to see our GP who tried to reassure us that there was nothing to worry about and he would probably grow out of it.  We were of course very anxious and concerned and I remember thinking that may be he had a brain tumour.  After each episode we hoped and prayed this strange illness would leave him.  But when it didn’t and Elliot had had 4 episodes every 5/6 weeks since the first one and we were getting no answers from our GP we insisted Elliot was seen by a Neurologist.    In May 06 my husband took Elliot to see an adult Neurologist who suggested a MRI scan and EEG. The MRI was normal but the EEG showed a slight abnormality of brain activity i.e. a slight slowness of brain activity. He then misdiagnosed Elliot with toxic encephalopathy and suggested that if he had another episode he be seen by a paediatric Neurologist.  


Elliot did have another episode in early August just before we were due to fly to the USA on holiday; whilst he was still in an episode we took him to see Dr Antonia Clarke at St Georges hospital in London. She diagnosed him within 5 minutes as he displayed similar symptoms to another patient a young man she had diagnosed. The doctor explained it was KLS and how rare the condition is and that she didn’t think she would ever see another case. With a diagnosis at least we knew what we were dealing with and that the prognosis was he would grow out of it one day. It was a relief even though we knew Elliot’s life and our family life would be potentially disrupted by KLS over the coming years. 


My husband and I made a conscious decision to carry on as normal and not to stop Elliot from doing things and making plans just in case he had a KLS episode. 


We took Elliot on holiday to the USA that year and he slept most of the first few days but when he came out of the episode he was able to enjoy the rest of the trip.


Since that time Elliot has had 14 episodes in almost 5 years.  The first 4 episodes were only 5 weeks apart; the following 10 were an average of 20 weeks apart. The shortest period between episodes was 2.5 weeks the longest before now was 8 months and so far Elliot has been episode free for 15 months.


In the early days after Elliot was diagnosed we took him for acupuncture, physiotherapy and homeopathy and even a faith healer, but nothing worked.


A couple of days before Elliot goes into an episode he feels it coming on, he says that he feels his body is slowing down and he gets tired.  In the early days we were not aware of the signs and Elliot was in denial he was getting sick, now we can see the change in his manner, he becomes subdued and quiet.  Whilst he is in an episode all he wants to do is sleep, eat and be in a darkened room, which is not too warm. He likes to watch the comedy Friends over and over and will laugh out loud and sing along to the theme tune, he doesn’t need or want company and whilst we know he is capable of holding a conversation he has absolutely no interest in what is going on around him.  During these periods he becomes very affectionate to family members.  When Elliot is in an episode he craves junk food which he would normally avoid - being very sporty and athletic, he is careful to eat well and is dismissive of people who don’t eat healthily, of course in KLS this all goes out the window!


One day just before he came out of an episode he was touching my husband all over with one hand, he explained that he needed to do this to make sure he was really there and not in his imagination! Elliot has described his KLS experiences as living in a glass box or in a dream and he’s not sure what is real and what’s not.  When Elliot comes out of an episode he can’t sleep for 2-3 nights and initially sweats a lot. He then seems to have even more energy than normal for sport etc.


During the last 5 years we have not stopped Elliot from taking school trips or trips with family and friends, we have always felt it was very important that in between episodes we just got on with our lives and if it happens we will deal with it. We never cancelled anything.  The school were very supportive and allowed Elliot to go on a number of trips including: Barcelona sports trip, Iceland field trip, 2 ski trips with the school and D of E expeditions bronze, silver and Gold (although my husband did have to drive 4 hours to Dartmoor to collect him as he went into an episode on day 2 of the expedition). We went on Ski trips as a family, Elliot did get sick on one and missed out on the weeks skiing.  For family holidays I would always make sure we could get room service if staying in a hotel and always packed snacks and his portable DVD player with plenty of Friends DVDs.  95% of the time Elliot was well during these trips.  We also allowed him to go to Newquay with friends when he was 16 on the proviso that his friends would call us if he got sick and we’d collect him.  The only time I was particularly concerned and almost didn’t let him go was this year’s trip to Crete with a group of friends to celebrate the end of A levels.  After careful consideration and knowing his friends would take good care of him I let him go, all was well.  Elliot is lucky that he has a great bunch of friends and he made the decision early on to tell them about KLS, they have been very supportive as have friends and family. 


Elliot is now studying BioSciences at Leeds University and enjoying life to the full. We don’t know if this is the end of KLS for Elliot, we obviously hope that after 15 months it is, but we take one day at a time. 

Here is an update from Elliot's mum.

I wrote a case study a few years ago, as you may recall Elliot suffered from KLS after contracting a flu like virus when he was 13 in Jan 2005 and had his last episode July 2010. I guess he was one of the lucky ones and although he missed extended periods of school, slept through holidays and celebrations he worked very hard got excellent grades at GCSE and ABB at A levels he was accepted to study Human Physiology for 4 years with a year in Industry ( his interest in the subject was in part inspired by his own illness) he is now on his placement year with a multinational Technology company and loving every minute. As I write this update he is on the slopes in France enjoying a ski holiday with friends. Elliot never allowed KLS to stop him achieving his goals if anything it made him more determined. I hope this short update will be a positive message to both KLS sufferers who may be finding it hard to see a future and for parents who are struggling to see a light at the end of the tunnel. My advice would be to stay positive, don't put your life or that of your child on hold, make the most of KLS free periods, tell friends, family and school all about the condition they will be very supportive and above all stay positive - one day life will go back to normal and it will all seem like a bad dream.

I could not be prouder of what Elliot has achieved and I believe in part having KLS for 5.5 years has given him the drive, determination and humility to succeed and be a very decent young man.

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