Thursday 27 November 2014

Learning to live with the nightmares of narcolepsy

Debilitating condition left a once active, happy child too exhausted to play his beloved sports, plagued him with terrifying hallucinations and drove him to self-harm.

Alex Lawless, who developed narcolepsy after taking Pandemrix, with his mum Mairead. Picture: Ronan Lang
Alex Lawless, who developed narcolepsy after taking Pandemrix, with his mum Mairead. Picture: Ronan Lang

Terrifying hallucinations, aggressive behaviour, and threats of self-harm – the nightmare of narcolepsy has devastated the life of Dublin schoolboy Alexander Donovan.

The nine-year-old must take a 20-minute nap in school each morning at 10am, and another 30-minute doze in the afternoon when he returns to the family home in Rathgar.

This is despite the strong medication which his mother, Mairead Lawless, says, is actually licensed for use by adults, but which is crucial to keep Alex alert in the mornings, and provide the deep night-sleep denied him by his debilitating condition.

"It's a struggle to keep him awake enough to do his homework.He struggles to concentrate and focus, and finds it difficult to pay attention in school. He can be very bad-tempered when he's tired and he's a very different child to what he was."

Her son, she says, can no longer find the energy for the sports he once adored – while other boys of his age are out kicking footballs and getting into mischief, his mother says all Alex wants to do is sit on the sofa.

Once an active, outgoing child, who was full of energy and had lots of friends, Alexander has become quiet, lacking in energy and unable to participate in activities with his pals.

He pushes himself to do Cub Scouts and plays hockey once a week at school, says his mum, but it's a major effort.

"He cannot go on public transport on his own – he has to be with someone or he will fall asleep," she reveals.

Alex was just five years old when he received the Pandemrix vaccine (for swine flu) in January 2010. His mother, father Ray and older sister Eleanor were also vaccinated.

About three months later, at the beginning of April, Lawless, a bank manager, started to notice that Alex was falling asleep at odd times – even on very short car journeys.

She brought him to the family GP. Blood tests showed only a slightly lowered iron and white blood cell count.

By mid-May there was no improvement.

Still falling asleep at peculiar times, Alex was now also enduring horrifying nightmares. "He became very scared of the dark and said he was seeing things – and it started to get a bit scary.

"He was sleeping for up to three hours in the afternoon after coming home from school. He'd become very aggressive and irrational after waking up. Sometimes he'd start screaming while sleeping – but his eyes would be open," she recalls.

She later discovered that her child was having what are called hypnogogic hallucinations which is a symptom of narcolepsy.

"You're effectively awake, but still dreaming and not distinguishing between dream and reality," Lawless explains.

More consultations and tests followed, but by February 2011 Alex put on a lot of weight – another symptom of narcolepsy as Lawless was to discover.

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