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.
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.
Alex, she says, repeatedly asked her why she couldn't see the terrifying things he was seeing.
"I became afraid that he had psychological issues," Lawless recalls. "He was seeing things that I could not see and became angry when I couldn't see them."
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.
A formerly slim child, Alex, now aged nearly six, was wearing trousers for a nine-year-old.
At one point Lawless did suggest the possibility that Alex had narcolepsy but was told that this was extremely rare in children and that she should rule it out.
The tests continued, but nothing showed up.
Then, in February 2011 Alex started to talk about self-harm. "I was finding red marks down his arm, where he'd been scratching his nails along the inside of his arms."
One day after he had misbehaved, she put him on 'time-out' and instructed him to sit on the bottom step of the stairs:
"He said he didn't want to be alive anymore and was very distressed – he said that he wanted to strangle himself."
His energy levels plummeted. "He had to give up the Gaelic football, because he was too tired and emotional for it – and he was not able to play games with his friends. It was an horrific time," she says.
"Alex was acting so out of character that we knew there was something going on. At times he'd have been behaving like somebody possessed; he was so aggressive, argumentative and irrational in the afternoons.
"This was a complete change from the gentle, placid and happy child he used to be."
Then, in March 2011 the breakthrough came – another mother showed Lawless a newspaper article about a girl who seemed to be displaying similar symptoms.
"My hair stood up on end," she recalls. "The article was about a girl who had all of the same symptoms as Alex – falling asleep, nightmares and so on."
Things moved very quickly after that – following more tests Alex was officially diagnosed with narcolepsy in August 2011.
"Soon afterwards we got in touch with other children who had had the vaccine, and they all had symptoms like Alex and they were getting a diagnosis of narcolepsy."
In 2011, Lawless joined other parents in establishing the organisation SOUND, (Sufferers of Unique Narcolepsy Disorder) which supports families affected by narcolepsy and also received the Pandemrix vaccine. There are currently more than 60 such families in the group.
It's now believed more than 70 children in Ireland developed narcolepsy after receiving the swine flu vaccine.
Sound has four members who were adults when vaccinated, says Lawless. "Adults have also been affected although so far the numbers making themselves known to Sound are small in comparison with the number of children to date."
The group successfully campaigned for supports to be put in place for the affected children, though Lawless emphasises, these are on a temporary basis.
"We got a number of supports put in place for the children and adults – these include discretionary medical cards which can be reviewed annually, as well as expenses for narcolepsy-related medical expenses."
The medication is very expensive – the night-time medication alone can cost up to €25,000 a year, she says.
"In addition to that, we organised for the children attending to be assessed for education needs – there is now an allowance for extra tuition," she says.
"Our children have a life-long condition which not only affects their childhood but will affect their work and study for the rest of their lives."
Health Minister James Reilly recently detailed the services being provided to people with narcolepsy following pandemic vaccination, but Lawless says these have not yet been confirmed to SOUND as permanent supports: "These are not permanent and there is a concern that they could be withdrawn at any time," she says.
She also questions the minister's interpretation of research carried out by renowned US narcolepsy expert Dr Emmanuel Mignot.
Referring to a paper by Dr Mignot, which was published online in October 2012, Mr Reilly said that in the majority of narcolepsy cases, appropriate medication and lifestyle modifications could see functioning restored to about 80pc of normal.
According to Dr Mignot, a return to close to normal functioning was possible in about 80pc of cases through a combination of lifestyle changes and pharmaceutical treatment tailored to each individual.
His study advised that many patients with narcolepsy benefited best from combined drug therapy and behavioural modifications – scheduled napping one to three times a day, for example, while certain drug treatments had found to be of benefit to patients.
However, Ms Lawless points out, the treatments alluded to by the minister when quoting from Dr Mignot's research are actually not deemed suitable for children
"The issues we have with the minister's interpretation is that the therapeutic treatments that are referred to by Mignot are not licensed/recommended for use by children," she says.
Referring to another piece of research published in December 2012 by experts at Stanford Medical Centre, with which Dr Mignot was also very closely associated, Dr Reilly said it indicated that narcolepsy was an autoimmune disorder, and that it was now possible to explore new therapies which may have more beneficial effects.
However, Ms Lawless said SOUND believed that the fruits of the research referred to by the minister were "so far in the future" that the children would be grown up by the time such therapies were available.
As a result, she believed they would be disadvantaged both educationally and career-wise.
"As our children go through education, they face huge difficulty maintaining focus and concentration which in turn will impact on exam results.
"We fear they will be discriminated against in job applications and employment due to their requirement to take naps and a propensity to lose focus/attention.
"They will likely be limited in operation of machinery including driving a car which curtails independence in itself, let alone ruling out many types of employment."
Lawless also pointed out that although the research indicated that the majority could reach up to 80pc of normal function, that still left a sizeable number who would not reach that level of functioning.
"Furthermore," she asks, "should we be happy about our children functioning at 80pc of normal capacity?"
GlaxoSmithKline, the makers of Pandemrix said: "Patient safety is our number one priority and we are actively conducting research on the observed association between Pandemrix and narcolepsy and on the interaction this vaccine might have had with other risk factors in affected individuals.
"Whilst people vaccinated with Pandemrix have been shown in several published studies to be more likely to develop narcolepsy than those who were not, further research is needed to confirm what role Pandemrix may have played in the development of narcolepsy among those affected.
"Narcolepsy is a complex disease and has a number of different potential contributory factors.
"The causes of narcolepsy are not yet fully understood but it is generally considered to be associated with genetic and environmental factors, including infections.
"It is crucial that we learn more about how narcolepsy is triggered.
"We remain committed to carrying out additional research into the potential role of Pandemrix in the development of narcolepsy.
"We are also supporting ongoing work from other experts and organisations investigating reported cases of the condition."
Health & Living