GIVE MY SON EPILEPSY?
Daily Mail April 6, 2004
As the campaign to prow MMR is safe intensifies, one mother claims the jab left her son suffering over 60 epileptic fits a day and says she has compelling scientific evidence to back it up
NO ONE knows precisely how Lewis Pickering's life might have prospered had he not been inoculated with the MMR vaccine. But his mother Wendy has memories, sharpened by regret, of the child he once was.
'Lewis was just joyous: a lively, lovely little boy who was bright and healthy and met all his milestones at the right time,' she says.
Yet today her adored only son is an adolescent imprisoned in a child's mind; bewildered by memory loss, prone to violent mood swings; sweet, sullen, aggressive and affectionate by turns.
His mind skitters and races, then drifts off into abstraction. He has no grasp of social behaviour, no sense of time or place, and no hope of independence.
But more than that, his young life is blighted by the severe epileptic fits that have assailed him since he had the triple vaccine for measles, mumps and rubella at 15 months. The safety of the triple vaccine — or MMR—was first questioned in 1998 in a report by Dr Andrew Wakefield which suggested a possible link between the jab and bowel disease and autism in children.
Since then, hundreds of parents have come forward claiming that their children have suffered autism as a result of having had the vaccine. Others have told of epilepsy and learning difficulties.
Wendy, who has always striven to preserve her son's privacy, now feels driven to tell Lewis's story.
Stung by the Government's obdurate refusal to engage in a debate over MMR, and devastated by the collapse last month of the parents' appeal for legal aid to fight for compensation from the vaccine manufacturers, she feels her only recourse is to speak out.
For Wendy believes she has compelling evidence of a link between the MMR vaccine and the onset of her son's epilepsy which would otherwise be suppressed.
Five-and-a-half years ago. Lewis, now 15, underwent emergency life-saving neuro-surgery to arrest potentially fatal epileptic fits. It was then that tissue from the frontal lobe of his brain was found to contain a strain of the measles virus that could only have originated in the MMR vaccine.
'Lewis has never had measles,' says Wendy. 'It could only have come from the vaccine. My son is a case study. I have watched him suffer this vicious assault from epilepsy.
'His anguish continues, and he dreads and hates the fits. I am 100 per cent convinced that the MMR vaccine precipitated the epilepsy. It has blighted not just Lewis's life, but hundreds of others.'
WENDY Pickering's grief for the bright boy she lost and the changed and diminished son who usurped him is compounded by anger. She reserves equal fury for the health authorities and the Government, who have failed to address her concerns.
'It's criminal,' she says. 'I am just asking for a proper investigation so the parents involved can know the truth.
'But all we hear is the same mantra: there is no link between MMR and epilepsy or autism — despite experts who claim to the contrary.
'All I've had is a letter from the health authority telling me they sympathise with the plight of my son. I don't want their sympathy. I want them to look at the evidence and ask some searching questions.
'To get this vital issue into the public domain, I have to expose my son to the glare of publicity. I don't want to do so, but I do it out of necessity.
'Our Prime Minister, Tony Blair, has declined to say whether his son Leo has had the MMB jab. He says he wants such personal information to remain private. Sadly, if I want this vital subject addressed, I have to compromise my own son's privacy.
'The pertinent question is: what does the Prime Minister know about MMR? What information does the Department of Health have? And when, particularly, are they going to investigate the measles virus found in my son's brain?'
While the Government conveniently absolves itself of responsibility, Wendy, 48, and her 55-year-old husband Brian, a production supervisor, live daily with the heavy weight of their son's dependency.
'Lewis cannot be left at home unsupervised,' says Wendy. 'We cannot let him walk into town alone because he has the vulnerability of a child. We worry so much about the future. When we're no longer around, how on earth will he cope?'
Lewis Pickering's personal tragedy began in September 1990, a month after he had the MMR vaccination. He was born in May 1989; a happy, responsive and bright baby who scored highly in all the standard health tests.
Then eight days after he was vaccinated, he suffered an allergic reaction: the raised itchy rash that covered his body was treated with antihistamine.
Four weeks later came the first seizure. 'I started to feed Lewis and he became vacant, still and unresponsive,' recalls Wendy. 'He just stared, completely blankly, and I was terrified. I phoned for an ambulance. I thought he was dying.
'At hospital they took brain X-rays, but they couldn't find anything wrong. Lewis fell asleep in my arms, then he just seemed to recover.'
The fits that ensued did not follow this pattern. "There were other seizures where he was vomiting, convulsing and turning blue,' says Wendy. 'The feeling of nausea persisted. Whenever Lewis had fits he complained of stomach pains.'
THE tyranny of epilepsy escalated. Lewis began to attend the mainstream school a short walk from the family home at Shoreham-by-Sea, West Sussex, when he was five.
Almost every night subsequently he was jolted into terrifying wakefulness by a seizure. 'He would suddenly sit up, eyes wide and shout out for Brian or me,' says Wendy. 'His hands would jerk uncontrollably. His face and mouth were contorted. The fits were so frequent we logged them in a diary.'
Wendy, a former legal secretary, has kept meticulous records of her son's seizures. She pulls out a huge file: 1993 was a bad year — almost every day is circled.
Lewis shuttled back and forth from hospital as efforts were made to control his fits with drugs. There were assorted combinations and cocktails. The drugs seemed to fog his mind and subdue his vitality. But they didn't suppress the fits. On one awful day he suffered 62.
'It was like madness,' says Wendy. 'We had barely finished writing down the details of one fit when another happened.
'I remember Lewis yelling: "Help me! I want my Dad! I love him so much. Where am I?" His awful bewilderment brought us to the brink of tears.'
In 1997, because of the severe gastric pain that accompanied Lewis's fits, he was admitted to the Royal Free Hospital, London, where Dr Andrew Wake-field's team carried out a colonoscopy.
A virus found in Lewis's gut matched one discovered in autistic children whose parents had made a link with their condition and MMR.
This association triggered fresh fears and convinced Wendy that further investigation was vital. She says: 'Just the thought of there being a connection with the measles virus was scary.
'I wondered what harm it was doing and what was likely to happen in the future. And we went on to experience just how much more awful it could get.'
What ensued was a waking nightmare in which Wendy and Brian came perilously close to losing Lewis. In July 1998, he suffered 132 epileptic seizures. The fits were escalating in intensity and frequency and within a month Lewis was in intensive care.
His epilepsy had failed to respond to every drug that had been administered and his body was convulsed by almost continuous fits. The succession of potentially fatal seizures had to be broken.
'The neurologist said he had another course of action left,' recalls Wendy. 'He said they would anaesthetise Lewis to stop all brain activity and try to break the cycle of fits.
'He said there was a chance that all his organs would pack up and he would die. I asked what the risk was. He said: It does not go into double figures." They agreed to go ahead.
'We would have given anything to have spared Lewis the suffering. As he was taken to intensive care, he said to me, in that straight-speaking way children have: "I'm not going to die, am I Mum?"'
Although Lewis survived the anaesthesia, it did not stop the fits. Wave after wave of them racked his body.
There was one drastic measure left. Lewis was rushed to Great Ormond Street Hospital in London for life-saving brain surgery. It was the last hope.
'It was as if we were in a disaster film, confronting one mountainous tragedy after another,' says Wendy. 'The anxiety was almost unbearable.
'I was told Lewis might become paralysed down his right side by the surgery. I could not envisage my lively son in a wheelchair. They said he might lose the power of speech. We did not know how he would emerge from the operation.'
In fact, the surgery to remove part of the left frontal lobe of Lewis's brain saved his life. He remained in hospital for six months but when he returned home he was a different child.
Mercifully, he did not lose his mobility, but he had to learn
from scratch and with slow deliberation how to walk again. He did not forfeit the power of speech, but he had to re-acquire the process of stringing isolated words into conversation.
Lewis suffers from frontal lobe syndrome. The condition is characterised by emotional volatility, problems with concentration, inattention and inappropriate behaviour.
Sufferers are bereft of the social skills that allow them to interpret body language or read mood. Their short-term memory is poor.
'Since 1998, Lewis's life has diminished,' says Wendy. 'We used to have so much fun. The changes since his operation have been dramatic and marked. My heart lifts now when he remembers someone's name, because he cannot even keep track of what happened earlier in the day.
HE DOES not know if it is morning or afternoon; whether he has had breakfast or lunch. I read to him every night, but I do not know how much pleasure he takes in it. His mind seems to drift.
'We have been through hell and so has Lewis. He is not the child we started out with. I remember the day he asked me: "Are you my mummy?" It was when he was making the slow recovery after surgery.
'Such moments are like snapshots that stick in the memory. I can still hear the tone of his voice and feel the turmoil of loss and confusion in his mind.'
Lewis attends a special school now. He is popular boy, both with teachers and pupils, and his beseeching brown eyes have a puppy-like appeal.
He is Wendy's only child, although Brian — a widower when he and Wendy met — has a daughter, Holly, 26, whom they both regard as their own.
After school, Lewis bounds into the house. He shows me first his Lego models, then his pet hamster, then his remote control car and X-Box. The house is rendered chaotic by the sheer force of his energy.
Lewis also suffers from Attention Deficit Hyperactivity Disorder. And you understand at once the scope and scale of his parents' exhaustion.
'Sometimes I feel worn down,' says Wendy 'Lewis has no independence. I cannot leave him for an hour. So tensions can run quite high. He still suffers from fits. They are more prolonged now and he says he hates living with the epilepsy.
'We have been through so much. It has been a mighty climb and it still is. We dare not look too far into the future. We have had to adjust to the boy Lewis has become. It has been like a bereavement and we are grief-stricken for him.
'As if we had not endured enough, we are now being denied our day in court. The health authorities are trying to bury any link between Lewis's epilepsy and the MMR. So my only recourse is to speak out. Other parents must be warned. Right and justice have to prevail.'
• INFORMATION about MMR may be found on the JABS website: www.jabs.org.uk