The boy who hibernates for WEEKS at a time: 11-year-old has been ‘robbed of his childhood’ by rare ‘Sleeping Beauty syndrome’
- Mason Howe, from Cornwall, has just had his longest ‘episode’ of six weeks
- He first experienced the rare condition, Kleine-Levin Syndrome, at six years old
- There is no cure, and his mother, Marie Howe, worries for his future
An eleven-year-old boy is suffering from a rare condition which makes him sleep for weeks on end, his parents claim.
Mason Howe, of Callington, Cornwall, has Kleine-Levin Syndrome – more commonly known as Sleeping Beauty syndrome.
It took two years for Mason to be diagnosed, as the condition, believed to strike one-in-a-million, can be mistaken for laziness or boredom.
Mason will sleep for around 20 hours a day during an episode, and the couple of hours a day that he is awake, his parents say he is in a dream-like state.
He struggled through Christmas in one of his worst episodes yet – lasting six weeks.
At a crucial time in his school years, his mother, Marie Howe, 41, worries for his future, his childhood already ‘robbed’.
Mason Howe, from Cornwall, pictured with his mother, Marie Howe, suffers with a one-in-a-million condition which makes him sleep for weeks on end
The 11-year-old had his longest period ever over Christmas, which lasted six weeks
Mrs Howe said his school, Delaware Primary Academy, Gunnislake, are supportive. Pictured, having a nap at Callington Primary School when his condition started
Speaking about life at home, mother Mrs Howe said: ‘It is like he is hibernating.
‘He has just been through a six week episode which lasted through Christmas. Thankfully Christmas was OK because the excitement stimulated him. But I’d say this was the worst episode he’s had.
‘The last episode before that went on for nearly three weeks.’
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Over the years, Mason has experienced approximately ten episodes a year.
The cause of the condition is unknown. But it’s thought there is a genetic factor, therefore Mason and his father, Craig Howe, 39, are being studied to find out more.
He is currently on lithium treatment, more typically used to treat bipolar disorder and treatment resistant depression, in an effort to alleviate his symptoms.
Mrs Howe said: ‘It really robs Mason of his childhood. You just never know. We have to take each day as it comes.’
Mason first experienced an episode of ‘Sleeping Beauty’ when he was six, which was triggered by a smoke machine.
Mrs Howe said: ‘We were at Butlins and it was smoke from a smoke machine that set it off. It is often triggered by a cold, or cough or flu symptoms.
‘He seems to pick up colds more easily and they do trigger more episodes particularly in the winter months.’
An episode of KLS is often triggered by an infection or sometimes by head injury, alcohol intake or sleep deprivation, according to KLS Support UK.
When Mason is in serious sleep mode he has to stay home from school with Mrs Howe, who describes herself as a carer for Mason.
Mason’s condition started at around six years old, and was first triggered by some smoke on holiday. Pictured, around the time the condition started
Mason is currently on lithium treatment, more typically used to treat bipolar disorder and treatment resistant depression, in an effort to alleviate his symptoms
‘He loves school,’ said Mrs Howe. ‘They have been absolutely fantastic. If he needs to have a nap in the day he goes off and has one and they understand why.
`His classmates are really good. They will come out and tell me if Mason has been sleeping because he doesn’t always know himself that he’s been asleep.
‘But he’s very clever and gets on with his school work when he can.
She added: ‘He is very clued up and he wants people to know that he’s not being lazy – he has KLS.
‘He gets sick of people saying he needs more sleep because he already gets enough sleep.
‘People always say to him things like, “I wish I could sleep for three weeks”. He doesn’t want to though.’
Mason and his family consult the Dr Paul Gringras – who recommended he try lithium – via Skype. Dr Gringras is believed to be the only specialist in the country and is attached to Guy’s Hospital.
Mrs Howe said: ‘It is meant to ease the symptoms but it’s quite a serious medication to take so they don’t choose it lightly.’
She hopes that the drug will make keeping up with school a bit easier for him.
Although she describes him as bright, and said the school is great at assisting him to catch up with work, Mrs Howe worries about the future.
‘He’s in Year 6 now so quite an important year,’ said Mrs Howe.
‘The workload is going to be a bit more and he’ll be going up to comprehensive next year. It is difficult.
‘Even though he’s been diagnosed for five years we are still finding things out and we worry how he is going to cope as he gets older.
‘How it is going to affect him with his learning and is he going to grow out of it? He wants to work but is he just going to sleep through everything?’
WHAT IS KLEINE-LEVIN SYNDROME – SLEEPING BEAUTY SYNDROME?
Kleine-Levin Syndrome (KLS) is a rare disorder characterised by recurrent bouts of excessive sleep associated with reduced understanding of the world and altered behaviour.
KLS usually starts in the teenage years but can occur in younger children and adults.
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.
People with KLS coming out of episodes will have little or no memory of what happened during an episode. Between episodes they have normal sleep, understanding and behaviour.
KLS episodes may continue for 10 years or more.
What are the symptoms of KLS?
Symptoms vary between individuals with KLS but the following first 3 symptoms are always present during a bout:
Hypersomnia (Excessive prolonged sleep)
Someone with KLS will ‘sleep’ 15 to 22 hours for days, weeks or even months. They feel and look exhausted. Sleep may be disturbed.
- Cognitive impairment
They experience confusion, reduced understanding and feel in a dreamlike state (derealisation). They cannot concentrate, have difficulty communicating, speaking and reading and do not remember events after an episode.
- Altered behaviour
Their demeanour is altered so that they appear spaced out or childlike. They are affected by apathy, are uncommunicative and may engage in automatic and repetitive behaviour.
Teenagers will stop normal activities such as using mobile phones, seeing friends and showering and may listen to the same music or watch the same programme repeatedly.
Some individuals with KLS have:
- Compulsive Eating (known medically as Hyperphagia)
Sometimes those with KLS eat compulsively and mechanically during a bout and have food cravings for sweets, snacks or foods they would not normally eat. Some eat less.
Some individuals, generally boys, experience hypersexuality or other disinhibited behaviour.
Some experience migraine headaches with hypersensitivity to noise and light.
If they are not in their home environment then some may become anxious, aggressive or irritable particularly if prevented from sleeping.
Some have autonomic symptoms including disturbed body temperature control, and altered blood pressure and heart rate.
Some may have hallucinations and delusions in some bouts.
Towards the end of an episode some get depressed and some experience elation and insomnia for one to three days afterwards.
Source: KSL Support UK
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