Parents call for report on sleeping disorder

Fri, Mar 9, 2012, 00:00

PARENTS OF children who have contracted the sleeping disorder narcolepsy through, they believe, receipt of the swine flu vaccine Pandemrix, have called on the Government to furnish them with a Health Service Executive (HSE) report on the issue immediately.

Martina Fitzpatrick, chairwoman of Sound (Sufferers of Unique Narcolepsy Disorder), whose son Conor Talbot (14) has the condition, said the report had been with the Department of Health for almost a month.

“That report pertains to our children, we gave their personal details and permission to use their hospital records. We’re very anxious to see that report and what is contained in it,” she said.

“We feel that it is taking too long and we feel that they should immediately make that report available to members of Sound.”

She added five young members of Sound were facing State exams this summer, “yet there is little or no movement on supports for them . . . we need a timeline for supports to be put in place”.

She said her son, who is taking the Junior Certificate this year, was struggling. “The medication would in some ways help him to stay awake at some points during the day, but he is struggling – he struggled the whole way through his mocks . . . This is adding stress to an already stressful situation.”

Minister for Health James Reilly said he would be bringing a memo to Government on the matter shortly. He acknowledged receipt of a report on the sleep disorder from the HSE’s Health Protection Surveillance Centre and said he would publish it.

He added he would be willing to meet members of Sound, which represents more than 230 children and their parents.

Dr Reilly said the main concern for himself and the Minister for Education was to ensure children with narcolepsy were given supports they needed to sit their exams. “I know parents are worried and I know the children themselves have enough on their plates without this additional burden, and we will do what we can to support them,” he added.

Preliminary data from Finland and Sweden in 2010 linked an increase in narcolepsy among young people with Pandemrix. Swedish data estimated the vaccination might cause three cases of narcolepsy for every 100,000 vaccinations. However, a more recent study has suggested narcolepsy is triggered by the swine flu infection itself, not the vaccine.

HSE clinics administered more than 900,000 doses of Pandemrix in 2009 and 2010.

The use of Pandemrix is no longer recommended in Ireland and GPs have been advised to return any remaining stocks. This year’s seasonal flu vaccine does not contain Pandemrix.