A SUPPORT group for parents who believe their children developed a chronic sleeping disorder after receiving the swine flu vaccine Pandemrix has said there are “a lot more” undiagnosed cases.
Sound (Sufferers of Unique Narcolepsy Disorder) was launched at the weekend by parents whose children have been diagnosed with narcolepsy.
The group aims to help parents to identify if their children are affected and to lobby the health authorities to support those already diagnosed.
“We believe there are a lot more children in this country who are suffering from this condition who have not being diagnosed and parents are struggling to figure out what’s wrong with their children,” said chairwoman Mary Fitzpatrick, whose 14-year-old son was diagnosed with the sleeping disorder having received the vaccine almost two years ago.
So far 30 potential cases of narcolepsy have been identified by the Health Service Executive (HSE)while the Irish Medicines Board said there were 16 confirmed cases of narcolepsy in individuals vaccinated with Pandemrix.
Irish health authorities have stressed that clinical research into a potential link between the vaccine and narcolepsy has not yet concluded, and the HSE is carrying out a study of all cases of the disorder in Ireland.
Since the issue received publicity on Friday, group committee member Mairead Lawless received “five or six contacts” from parents whose children were recently diagnosed or are in the process of being diagnosed. “We fear there are more,” said Ms Lawless, whose six-year-old son was diagnosed with narcolepsy.
At the meeting parents spoke of their children being sent for a catalogue of tests before being diagnosed and of a lack of available information. The group said it was contacted by health authorities by e-mail for the first time on Friday when the issue featured on RTÉ's News at Oneand is to meet the Minister for Health.
Minister of State for Europe Lucinda Creighton attended the meeting in an informal capacity to observe and said she was “shocked” by some of the stories.
More than 900,000 doses of Pandremix were administered by GPs in Ireland during the pandemic. The Government gave indemnity cover to drugmaker GlaxoSmithKline.
The HSE has said use of the vaccine is no longer recommended, and this year’s seasonal flu vaccine does not contain Pandemrix.
DECLAN ASHE (6) DIAGNOSED WITH NARCOLEPSY
"IT'S CHANGED him – we've been robbed of our little fellow, and of our family life," said Maria Ashe, from Maynooth, Co Kildare, the mother of six-year-old Declan, who was diagnosed with incurable sleep disorder narcolepsy two weeks ago suspected to be caused by swine flu vaccine Pandemrix.
His symptoms include sudden loss of muscle tone (cataplexy) triggered by laughing, mood swings and the need for a two and a half-hour sleep during the day.
Maria and Declan's father, Tom, are left with a "high level of guilt" over the vaccination, and say their son's life chances are restricted because he cannot cope with stress or be awake for long hours.
"He'll have to be on medication for the rest of his life," Tom said. The disease is incurable, and treatment options include heavy medication.
Declan was vaccinated against H1N1 swine flu in late 2009, after which his parents noticed a change. In late 2010 they became worried when his symptoms worsened. The parents went through many possible options. Getting no answers, they contacted the sleep clinic at the Mater Private hospital themselves.
They demonstrated cataplexy to the consultant by making Declan laugh. "I got him laughing and he collapsed to the ground – that was a giveaway to the consultant," Tom said. "Only that we were persistent and knew that this is not normal and did research ourselves, we'd still be going around in circles," said Maria.
Doctors cannot say there is definitely a connection between the boy's narcolepsy and the vaccine, as this requires further study. However, narcolepsy is very rare in young children, and the connection with the vaccine has been confirmed in Finland.
They are extremely unhappy with the lack of support and information for parents. "What we are most angry at the moment is the silence from the HSE," Tom said.
