OUR HEALTH EXPERIENCE: TESSA WATSON AND JESSICA HAND:MY DAUGHTER Jessica has narcolepsy. She falls asleep all the time – after school; after dinner; in the car; at school; in the supermarket; on the couch. She gets weak, loses control of her muscles and collapses. At night, her sleep is interrupted by bad dreams and panic attacks. She is lovely, quiet, nearly 16, happy in herself and never in trouble. But this condition is causing her, and our family, enormous trouble.
In December 2009, like other children at her school, and like her brothers who are seven and 13, Jessica was vaccinated against swine flu. Up to then, she used to be awake when I went to bed. But over the next couple of months, I noticed that she was going to sleep much earlier at night.
My family came to stay and, while we seemed to have got used to her sleeping, it was very obvious to them that during the day she regularly, and suddenly, leaned her head back and fell asleep. When she came home from school, she did her homework, fell asleep before dinner, and slept again after dinner.
Despite all this sleep, Jessica still slept at night, but she woke every hour or two, checked the time, and fell asleep again. She didn’t tell me then that she was also having night terrors and hallucinations.
In May 2010, I brought her to the GP because I was worried about all this sleeping. I had put it down to school stress and hormones – she had become uncharacteristically cheeky, and started answering us back – and I thought perhaps her iron levels were low. The doctor asked a lot of questions about Jessica’s diet and sent her for blood tests. These were all normal, and the doctor said she was fine, though Jessica said she often felt weak. The night terrors continued and her dreams and hallucinations were still very vivid.
One day, at the beginning of 2011, Jessica got extremely agitated during a row with one of her brothers; then she got weak and collapsed on the floor. She felt wobbly and was upset that she had lost control of her body. Now, when I look back, I remember many times when we were out and about and Jessica would suddenly feel one leg giving way and then fall. She felt people would think she was drunk, and this would make her very embarrassed and annoyed.
One Monday in early March 2011, Jessica told me that any time she displayed strong emotions at school, whether it was an outburst of laughter or anger, she lost control of her muscles, her knees got weak, and she had to pull herself up by holding on to a radiator. I thought, I must bring her back to the doctor.
A couple of days later, I went to the local shop and while I was queuing I happened to glance at the newspapers, which I never usually buy. And there, on the front of the Irish Daily Mail, was a story about children given swine flu shots having an increased risk of narcolepsy. I couldn’t believe it. Suddenly, all Jessica’s symptoms added up.
I brought her straight to the surgery and showed the newspaper to the GP, saying I thought it likely that Jessica had narcolepsy. The doctor wrote a referral letter for Temple Street hospital, and warned that there would be a long waiting list, but Jessica got an appointment in April, just four weeks later.
At that time, Jessica was still having regular spells of weakness and could hardly keep her eyes open. The night terrors were continuing and she was very frightened by one particular recurring dream. I later discovered that many other children with Jessica’s condition also have these dreams.
In the hospital, Dr Bryan Lynch, the neurologist, went through Jessica’s history and sent her for blood tests, a lumbar puncture and an MRI scan, and he referred her to the sleep clinic at the Mater Private hospital. She stayed there overnight while the staff observed her sleep pattern and, almost immediately, Dr Catherine Crowe, the sleep consultant, diagnosed her with narcolepsy.
Although up to 38 per cent of the population carry a gene that predisposes them to the condition, it is extremely rare in children. It is also incurable. Jessica is taking part in an international study that the Stanford Center for Narcolepsy Research in the US has set up to try to identify genes or other blood markers associated with the condition.
In June 2011, just before starting her Junior Cert, Jessica was prescribed Ritalin, which helps to keep her awake, but doesn’t prevent the weakness or the cataplexy (lack of muscle control). She could take another drug for that, but it is a form of antidepressant.
I fear for Jessica. I am afraid to leave the house if she is in the bath. I won’t let her go swimming. She falls asleep in the car, and I am not sure whether she will ever be able to drive. What if she has an episode at a disco? She will have to take drugs for the rest of her life. What if their effect reduces as she gets older?
At school she is finding it difficult to concentrate and she struggles to stay awake. The principal has given her a card that allows her to leave class at any time if she needs to go out for air. But I worry about her future. I wonder whether she will be able to hold down a job.
When I read the HSE report, which was published last month and confirmed a link between the Pandemrix vaccination and the onset of narcolepsy in at least 24 children including Jessica, I was filled with mixed emotions. I was angry and upset, but glad to have my feelings and suspicions acknowledged.
My main concern now is getting her through her schooling. At the request of the HSE, the Department of Education is beginning to assess the needs of the students affected. For example, when Jessica sits her Leaving Cert next year, will she get extra time? Might she need a separate room?
For the moment, the only support available to us is through Sound, a group for people affected by unique narcolepsy disorder. I want to raise awareness of Jessica’s condition to help other children who may be going through the same thing.
The Minister for Health is drawing up proposals on compensation, as the State indemnified the vaccination programme, but we have no idea what this might involve. It is so important to look after these children, whose futures are so uncertain.
Narcolepsy and the pandemrix vaccine
During the H1N1 pandemic of 2009 and 2010, 900,000 people were vaccinated with Pandemrix in Ireland, and approximately 250,000 of those were aged between five and 19. From that time on, an unusual number of cases of narcolepsy, a debilitating condition that causes excessive daytime sleepiness and sudden loss of muscle control, were observed in children and adolescents across Europe.
Last July, the European Medicines Agency (EMA), which is responsible for medicine safety in Europe, said “the results indicate a six- to 13-fold increased risk of narcolepsy . . . in vaccinated as compared with unvaccinated children and adolescents”.
The National Narcolepsy Study Steering Committee – comprising the HSE’s Health Protection Surveillance Centre (HPSC), in co-operation with the Department of Health and the Irish Medicines Board – investigated the increased incidence of narcolepsy in Irish children and adolescents since 2009, and the findings were published last month. The study established a link between the Pandemrix vaccination and the onset of narcolepsy in at least 24 young people who had received it. It said the rate of narcolepsy was up to 13 times higher in children who had been vaccinated, and that the absolute number of cases attributable to it was five per 100,000 vaccinated children and adolescents. The HPSC is aware of 18 further cases under investigation.
The support group Sound (Sufferers of Unique Narcolepsy Disorder) represents the families of around 35 children it believes to have been affected in Ireland. The group’s chairwoman, Mary Fitzpatrick, says: “The report confirmed what we already knew.” Sound is engaged in discussions with the HSE, the Department of Health and the Department of Education to work out the level of educational and medical supports that the Government will provide. Fitzgerald says last week’s meeting was very positive and the group hopes proposals will be put to the Dáil before the summer break.
According to GlaxoSmithKline, which manufactured Pandemrix, the vaccine “went through a rigorous approval process and underwent all safety and efficacy testing required for registration by national regulatory bodies”.
By October 2011, it had received reports of 377 cases of narcolepsy in people given the vaccine, which is no longer recommended for use in Ireland.
Contact Sound at soundcommittee2011@gmail.com
