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

Lily's KLS Story -

Link to Lily's Artwork expressing how KLS episodes felt to her

Lily was 17, studying for her A Levels at college, when she had her first episode of KLS. It was my birthday in November and we went ice skating at the Natural History Museum in London. Lily was uncharacteristically quiet and kept saying: “My head feels strange – I don’t feel well, I feel strange in my head”. She couldn’t describe what she was feeling and I just thought she was coming down with a cold. We went ice-skating and then to a restaurant for dinner. During the ice skating – Lily had not been her usual chatty and excitable self – she was very, very quiet. In the restaurant as the waitress handed out the menus, I noticed Lily had lay back on the seat and gone to sleep. We could not wake her up. She slept throughout the whole meal.

Over the next twenty five days she had a very high temperature and she refused to get out of bed – she slept and slept. She just wanted to be left alone and to not be disturbed. She did not want to eat or drink. She could not bear noise or light. She had an excruciating headache which pain killers did not touch. When I went in to wake her to get her to drink water, she just stared at me as if she did not know who I was. She had a glazed look and her face showed no expression. I was very worried and took her to the doctor – who reassured me that she had a nasty virus and she just needed rest and fluids. But the massive change in her demeanour was really frightening me. Lily is normally a gregarious, noisy, sociable girl who thrives on company and being the centre of attention. On the few occasions she had been sick before; she would still crave attention and would want to be downstairs with the family rather than being alone in her bed upstairs. But now she wanted to be upstairs and alone, in the dark with no company, no light or noise and no food. She did not cry or show any emotion – she just stared blankly at me and told me to leave her alone. She slept 23 hours a day.

I was extremely frightened and not convinced that this was just a virus. Then miraculously after 25 days, just before Christmas, she woke up and was better. It was as if someone had flicked a switch. She was chatty, expressive, emotional and desperate to see her friends. She was buzzing with energy and couldn’t sit still or rest – in fact she barely slept for a few days. She couldn’t remember anything that had happened over the previous twenty five days – she just knew that she had been ill. She didn’t want to talk about it – she just wanted to forget it and get back into living her life to the full.

Then just after New Year, the day Lily was due to go back to college to take her Mock A Level exams – exactly the same thing happened. Once again she was back in bed, sleeping 23 hours a day, not communicating, not appearing to recognise me. I had lost my daughter again and this time I was even more worried. Lily was sent into hospital. The Consultant Neurologist tested to see if her drink had been drugged on New Year’s Eve, she was tested for meningitis, encephalitis, epilepsy, and a brain tumour. Thankfully all of these tests came back negative. But we still did not have an answer. After three weeks, once again, as though someone had flicked a light switch, Lily recovered.

Once again she could not remember anything that had happened. The Neurologist could not give us a definitive diagnosis. He suggested possible migraine, M.E or depression. However, as Lily had no recollection of any events during either episode the Neurologist wanted to check that her memory had not been affected. He sent Lily for three hours of testing with a Consultant Clinical Neuropsychologist. The results showed that Lily’s memory had not been affected but he could not explain why Lily could not recall anything during those two episodes. By the end of February, Lily was desperate to catch up on her college work and get on with her A Levels. We tried to put it all behind us.

In March it was Lily’s 18th Birthday and we went on a family holiday. Lily was relaxed and happy and she had a lot of rest. However after a 12 hour flight home, Lily went into her third episode. Her 18th Birthday party had to be cancelled as she lay in bed sleeping again. This episode lasted 2 weeks.

With all the major neurological explanations ruled out, Lily was sent to see a Consultant Endocrinologist. She endured another battery of scans and blood tests which did not give us an answer. Next Lily was referred to see a Gynaecologist. After more tests and scans we still had no answers, so she was referred back to the Neurologist, who suggested that her condition might be psychological so she was then referred to a Consultant Psychiatrist. He thought there might be a possibility that she was suffering from a sleep disorder so he sent her up to London to see a Consultant Neuropsychiatrist. He ruled out a sleep disorder and suggested she was suffering from “recurrent depressive episodes”, and he referred her back to the Psychiatrist. He prescribed anti-depressants and sent Lily for Cognitive Behavioural Therapy with a Psychologist. Lily and I both knew that Lily was not depressed, but she persevered with the CBT and medication until July when she had her fourth episode which lasted 18 days. However this time she was awake for a couple of hours a day and when awake she was afraid to be left alone. When awake she was very clingy, wanting to be cuddled and panicking if I left the room. She behaved like a four year old, cuddling her teddy, sucking her thumb and crying that she thought she was going to die. She craved crisps and sweets and could not stop eating when awake. She still could not tolerate noise or light and she still had a very bad headache and appeared confused and vacant. She vomited several times and complained that her chest hurt. We still had no answers.

In December Lily had her fifth episode which lasted for a month. During this first year of KLS Lily had seen seven different Consultants, undergone hours of tests in hospitals and she had lost a total of 104 days – almost a third of the year – sleeping in a nightmare. Yet we still did not know what was wrong with her – nobody could help us with a diagnosis or medication.

The following two years saw more episodes. The episodes were less frequent but the length of each episode increased. By this stage in an episode, Lily was awake for up to four hours a day. She still had the splitting headache, some sickness, muscle aches and chest pains. She could not differentiate between dreams and reality. She still struggled to communicate and she appeared vacant and apathetic. She still could not tolerate noise or light or any other stimulation. She could hear voices and she had hallucinations. She craved food constantly. She became frustrated and agitated yet she always remained scared and when awake she needed me with her at all times. However, it now took her longer to recover from each episode.

In February 2010 she suffered a 29 day episode, she recovered for 2 weeks and then she went straight into another episode. By the end of those two episodes I was despondent that we still did not have an answer. By this stage Lily was at University studying for her Degree. However, it was becoming harder for her to keep up with the work and she did not meet the criteria for “extenuating circumstances” as we still did not have a diagnosis. Then just as the ‘back to back’ episodes were coming to an end, I read an article in the “Daily Mail” about a girl called Louisa Ball with an illness called Kleine-Levin Syndrome. As soon as I read the symptoms I recognised them. I contacted the journalist and asked her to forward my details to Louisa’s parents. They called me and it was such a relief to finally find someone who knew what I was describing and who understood what we were going through. But unfortunately as Lily was 20 she could not be referred to the Paediatric Consultant who gave Louisa her diagnosis. I spoke to the KLS Foundation in America and they suggested I contact Professor Nutt. I managed to track him down and speak to him on the phone. When I described Lily’s symptoms he told me that it was highly likely that she had KLS. Within a few hours of reading Louisa’s article in the Daily Mail, we finally had a name for this mystery illness which had destroyed Lily’s life for the past three years. However we had to wait for Lily to come out of that current episode before I could take her up to Chelsea and Westminster Hospital to see Professor Nutt. He confirmed that Lily had Kleine-Levin Syndrome.

Lily finally had a diagnosis. Knowing what we were dealing with helped. I now had the chance to research the condition, and through the KLS Foundation I was able to talk to a few other parents of KLS sufferers. Then in October, Annette, whose son had recently been diagnosed with KLS, set up a private face book site. There are now more than 160 people worldwide who are members of this group, where we can discuss treatments, coping strategies and medications and very importantly we can support each other. Annette and I met up in December to discuss the possibility of setting up a UK website/charity. Then in February 2011 we also met up with Caron and we started to plan the website, spurred on by the fact that all three of our children were in an episode at the time. Quite simply, we saw the desperate need to raise awareness of KLS so that hopefully nobody else would have to go through the years of not knowing what is wrong with their child, or indeed being given the wrong diagnosis or treatment. We also recognised that once a diagnosis is made there is very little advice for parents.

It is only through talking to other parents , I now understand that in an episode Lily feels like she is trapped in a horror film where everything is confusing, sounds are strange, vision is disturbed and any movement is exhausting. It is not just a case of her simply sleeping for hours and hours. Her brain cannot process information. When asleep, her dreams are vividly real. When awake she hallucinates and nothing feels real. When she is awake every second is literally a nightmare for her. We cannot have any noise, or any visitors. She needs to watch the same familiar children’s film (quietly) over and over and over again – because it is familiar she can understand it. Anything that is not familiar will confuse her and throw her in to a panic. Her body temperature will be disturbed – one minute she is shivering – the next she is boiling hot. During the last episode which lasted 46 days, I managed to persuade Lily twice to sit in the garden wrapped in a blanket for 10 minutes. Apart from that she did not step foot out of the house. When her sister came home from university for a few days, it really confused Lily – she kept asking me “why is she here, I don’t understand?” I would quietly explain, and then ten minutes later she would ask the same question again and again. Now I understand how quiet and calm and familiar Lily’s environment needs to be when she is in an episode. Our 12 year old son made me realise how much we have all had to adapt to living with KLS, when the day after Lily came out of the last 46 day episode, he flung the front door open after school and shouted “yeah I can make noise again now Lily is better”.

Those three awful years of not knowing what was wrong with Lily or not knowing what to do to help her are over. I no longer have to listen to doctors, friends and family suggesting through their ignorance that Lily is spoilt, lazy and self-indulgent. Now that I understand KLS I am more confident that I know how to care for her when she is in an episode. I know that when Lily is in an episode that feels like it will never end, I can be reassured by my KLS friends.

Whatever the future holds, Lily has learnt that regardless of what she has missed out on during an episode, she needs to pick herself up and live every moment of her life to the full. I am so proud of her determination to graduate next year. I am so proud of her tenacity at managing to keep part time work going. I am very proud that she has come to terms with KLS and is happy for me to write her story in the hope that this website might help others.

Most importantly now that I know what KLS is, when each episode strikes I know that eventually it will end and I will get my lovely, vivacious, happy daughter back.

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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