ADS
The family of an eight-year-old boy with narcolepsy are blaming the swine flu vaccine for his sleep disorder.Ben Foy suddenly falls asleep up to 20 times a day and often collapses without warning.
His mother Lindsey, 33, and grandfather Brian Hamilton, 60, say he has also become bad tempered and blame his condition on the swine flu jab Pandemrix.
Ben Foy's mother, Lindsey, 33, believes that he developed narcolepsy after having the swine flu vaccine. He now falls asleep up to 20 times a day and collapses if he gets excited
The vaccine was given to almost a million children under the age of five in 2009 and 2010 before being withdrawn because of its links with narcolepsy.
Ms Foy, a mother-of-three, said: ‘Before Ben had the jab he was a very healthy little boy. It was only after that he started showing symptoms of narcolepsy.
‘It started gradually and at first he just seemed more tired than usual.
‘He'd just started a new school year so we thought that might be causing it and didn't think much of it.‘Soon after, he started falling asleep and his teacher told us he kept napping at his desk and they would struggle to wake him up.
‘He found it exhausting to walk home from school and he started collapsing so we knew it was something serious.’
Mr Hamilton, a chauffeur, said: ‘Since Ben had the jab it has been an absolute nightmare for us.’
Ben does not only have narcolepsy, he has also developed cataplexy - a sudden loss of strength triggered by a strong emotion such as excitement.
Ms Foy says that Ben has also become bad tempered and she blames his condition on the swine flu jab Pandemrix. She says that before he had the injection he was a 'very healthy little boy'
He had the injection in January 2010 and started showing the first symptoms the following September.
Doctors sent him for tests - including CT scans, sleep studies, MRI scans, blood tests, a lumbar puncture and an ECG - before he was diagnosed with narcolepsy two years later.
Ms Foy, from York, said: ‘For two years doctors didn't seem to know what was wrong with Ben, which was very distressing for us.
‘He would fall asleep up to twenty times a day and he started having mood swings.
‘When he was younger we used to call him the little Peter Kay, he was very funny and happy. Now he has really changed and he can be bad tempered.
Ms Foy says she knew Ben had narcolepsy before he was even diagnosed because she had read about the link between the injection and the condition
‘It was only when I read about narcolepsy and its possible link to the swine flu jab that the penny dropped.
‘As soon as we saw it we just knew that was it. It was like someone was describing Ben.
‘The doctors had to carry out their tests before they could make an official diagnosis but it didn't come as a shock at all when they told us he had narcolepsy. We already knew it."
Ben's family chose to treat his condition without the use of prescription drugs until May this year.
Mr Hamilton explained: ‘The drugs initially offered to Ben are linked to anti-depressants and have very serious side effects.
‘They are drugs you don't want a child taking if it can be avoided and so we went down the track of trying to alter and manage his lifestyle to combat the symptoms.
‘We took him to a child psychiatrist and altered his diet. We also noticed that it was when Ben would get excited that he would collapse so we tried to manage that.
‘The only thing he had to stop doing completely was playing football because he kept collapsing on the pitch.
‘We were worried for his safety so he had to stop playing for around two years.
‘Now he's older, he's able to recognise himself when he's going to collapse and he takes a few minutes out of the game so he has just started playing again.
‘We have to keep a close eye on him when he's doing things like having a bath or crossing the road but we've managed his condition as a family really well and Ben takes it in his stride.
WHAT IS NARCOLEPSY AND HOW IS IT LINKED TO THE SWINE FLU VACCINE?
Narcolepsy, which occurs in one in every 2,000 people, is a sleep disorder that causes a person to suddenly fall asleep at inappropriate times.
It is a long-term neurological condition that disrupts normal sleeping patterns.
Symptoms include, sleep attacks, daytime sleepiness and cataplexy - temporary muscle weakness in response to emotion.
It is often caused by an autoimmune response - this is when antibodies are released by the body but instead of destroying disease, they attack healthy cells.
In the case of narcolepsy, antibodies attack the areas of the brain that produce a sleep-regulating chemical.
There is currently no cure but the condition can sometimes be managed, for example, by taking regular naps, eating healthily and exercising. In some cases, medications such as antidepressants or stimulants can also help.
It is thought that for every 55,000 children who were given the jab, Pandemrix, one has developed narcolepsy.
Researchers, who published their findings in the British Medical Journal, studied 75 children with narcolepsy and found that 11 of these had received the vaccine before their symptoms began.
The vaccine is associated with a 14-fold increase in a child's risk of developing the condition.
Since 2011, the Department of Health has prevented the use of Pandemrix in people under the age of 20.
It is a long-term neurological condition that disrupts normal sleeping patterns.
Symptoms include, sleep attacks, daytime sleepiness and cataplexy - temporary muscle weakness in response to emotion.
It is often caused by an autoimmune response - this is when antibodies are released by the body but instead of destroying disease, they attack healthy cells.
In the case of narcolepsy, antibodies attack the areas of the brain that produce a sleep-regulating chemical.
There is currently no cure but the condition can sometimes be managed, for example, by taking regular naps, eating healthily and exercising. In some cases, medications such as antidepressants or stimulants can also help.
It is thought that for every 55,000 children who were given the jab, Pandemrix, one has developed narcolepsy.
Researchers, who published their findings in the British Medical Journal, studied 75 children with narcolepsy and found that 11 of these had received the vaccine before their symptoms began.
The vaccine is associated with a 14-fold increase in a child's risk of developing the condition.
Since 2011, the Department of Health has prevented the use of Pandemrix in people under the age of 20.
‘There are good days and bad days and sometimes he does get upset but on the whole he's fantastic at coping with it.
‘What he's doing during the day really impacts upon how bad his condition is.’
Ben's family eventually decided to try prescription drugs on a trial basis as they were concerned he would be bullied as he got older.
They were first told he could have the drugs modifinal and sodium oxybate but modifinal has been stopped on medical grounds and the NHS has now said it can no longer fund the sodium oxybate.
Initially Ben's family decided to treat his narcolepsy with diet changes as they were worried about the side effects of medication. They then became concerned that he might be bullied so he is now on medication.
Mr Hamilton added: ‘If he can't get the medication he's not going to have the same chance as the lad next door. He needs this medicine to keep up with the kids at school.
The chance of developing narcolepsy after receiving a dose of the vaccine is somewhere between one in 52,000 and one in 52,750
‘I hope Ben's case will help raise awareness of the link between narcolepsy and the swine flu jab and eventually force the NHS to take responsibility and compensate families like ours.’
An NHS spokesperson said: ‘It is important to point out that the risk of narcolepsy is thought to be extremely low.
‘The researchers estimate that the chance of developing narcolepsy after receiving a dose of the vaccine is somewhere between one in 52,000 and one in 52,750.
‘Due to the results of previous studies, Pandemrix is no longer given to those under 20.’
So far, across the country, 11 children have been identified as possibly having developed narcolepsy after having the injection.
While for the vast majority of children the swine flu jab proved harmless and effective, the UK Health Protection Agency has found that giving the jab to young children increases their chance of developing narcolepsy by 14 times.
It may be that the children affected would have developed narcolepsy later in life without the injection. No one knows for sure.
What is known is that by 2011 there was already sufficient concern over the potential link for the Department of Health to issue new guidelines banning the vaccination for anyone under the age of 20.
ADS
No comments:
Post a Comment