This comes after a group representing families of 16 children between the ages of 6 and 18 years approached the HSE seeking to have a special fund set up to support young people who have been diagnosed with what they are calling “unexplained narcolepsy”, following administration of the jab.
Former head of the Mental Health Commission, Hugh Kane, who is part of the group Sound (Survivors Of Unexplained Narcolepsy Disorder) said there was not enough information and support for those affected.
The Irish Medicines Board says it has just 13 reports of adverse effects, but Mr Kane said Sound represents 16 children. These include a relative of Mr Kane and another young person who is sleeping for 20 hours a day.
“There has to be more cases out there. These kids are scattered all over the country and the group has only really come together through word of mouth,” he said.
Mr Kane called on people to come forward if they believed their child was affected. He said it was disgraceful that doctors didn’t seem to be able to diagnose it properly.
Mr Kane said many of the young people were finally diagnosed through a dedicated sleep clinic at the Mater Private. “They are getting referred to mental health services for depression, being told they are epileptic, and the answer seems to be to put them on Ritalin — a drug which is used to treat ADHD. We believe there are many more cases given the route we went through for a diagnosis.”
Mr Kane’s family member was vaccinated in January 2010, and within two weeks he was experiencing the unexplained episodes of sleep.
“He had every test under the sun and was seen by everyone possible. We were told it was viral and ‘should go away’. Then my daughter was reading about narcolepsy and told me to have a look at it. So we basically diagnosed it ourselves and then went to the Mater Private where it was diagnosed.”
Mr Kane said the group had met with the HSE raising concerns and looking for a fund or an international expert to come and advise families of what they should be doing.
“This is a lifelong neurological disorder. Falling asleep in school becomes serious the older you get and what about exams, driving a car and things like that? People need support. I know the system inside out from working in the services for years but most people don’t know what to do.”
Last week the European Medicines Agency committee for medicinal products for human use recommended that Pandemrix should only be used in people under 20 years of age if the recommended annual seasonal vaccine was not available. This followed an increased number of reported cases of narcolepsy among children and adolescents in Finland and Sweden.
The IMB said it is following up on and evaluating all reports of suspected cases of narcolepsy in those who have received Pandemrix.
The HSE said it is seeking to put the appropriate services in place for families, as required.