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Don't let other teenagers die from epilepsy like my Jamie: FAMILY HEALTH; Mum's plea for research into mystery killer.

WHEN Jamie Griffiths collapsed and died in the bath just two weeks before his 16th birthday his distraught mum thought he had drowned.

In fact Jamie's tragic death was due to epilepsy. Yet neither Jamie nor his mum Debbie had ever been warned that the condition which affects 420,000 people in Britain could kill.

"The doctors continually told us that once his epilepsy was under control it would just be a minor hiccup in his life," says Debbie, 34, from Windsor, Berks. "I had no idea he could die. He had everything to live for. He was looking forward to his birthday and had a job lined up in a local supermarket when he left school this summer.

Jamie died from a little-known syndrome called Sudden Unexplained Death in Epilepsy (SUDEP), which kills 1,000 people in Britain every year, most of them under 30.

Yet the illness is starved of research funds and largely ignored.

Now a charity, Epilepsy Bereaved, is trying to raise awareness of the fact that epilepsy can be a killer.

Next month its representatives will meet Health Minister Paul Boateng to discuss proposals for a national inquiry into SUDEP.

"Epilepsy is the most serious and common neurological disorder, yet sadly it is also the most neglected," Jane Hanna, who helped set up the charity after her partner died of SUDEP.

"Because of modern drugs doctors think optimistically about epilepsy, and until recently many did not believe people died from it."

Jamie had suffered from epilepsy since he was 13. Doctors diagnosed "petit mal absences" and put him on anticonvulsant drugs.

"He never lost consciousness. He would just suddenly look blank and staring, like he was daydreaming," says Debbie, a mum of five.

"But the drugs seemed to make him worse. The doctors told that once they got the dose right Jamie would be fine.

"But after about six months he started having a terrible reaction. He was hallucinating, being sick, and becoming confused." A year later Jamie had his first fit. There was no shaking or twitching. He just suddenly fell, rigid and stiff, to the floor.

Despite having numerous tests including brain scans and trying a variety of drugs his condition deteriorated.

Doctors became concerned and in October last year sent Jamie for an ambulatory monitoring EEG.

Electrodes were placed over his scalp to monitor the electrical impulses from the brain.

They were kept in place for 48 hours to check exactly what was happening before, during and after a fit.

Four months later - tragically, before the results of the tests were ready - Jamie died.

"He always had a fit on a Friday morning, 20 minutes after getting up. But on this particular Friday he was fine," says Debbie.

"It was half-term and he was helping out on a nearby farm. He was fine when he came in. We had a chat and then he went for a bath. Then I remembered I wanted to ask him something. I knocked on the bathroom door and called his name

"The door was locked and I had to force it. He was lying under the water. I managed to pull him out and gave him mouth-to-mouth and heart massage. But it was too late

"For the next three days I assumed he had drowned, but the postmortem showed scarring of the brain. He had died of epilepsy."

Ironically a month after Jamie's death the test results came through - they showed he was unknowingly having epileptic fits throughout the night.

"It is such a waste of a life," says Debbie. "Nobody warned me, nobody warned Jamie. We were told he mustn't let epilepsy affect his life but it killed him. I spent his birthday at his graveside." Dr Stephen Brown, a consultant neurologist at Norwich Community Health Trust explains: "Most people with epilepsy take medication to prevent seizures and it works.

"People whose seizures are well controlled are not at risk of sudden death.

"But there are some who still have seizures despite treatment.

"Many of them think that nothing else can be done and often continue with repeat GP prescriptions for years.

"But it is important that someone who is still having seizures goes to see a specialist because there are lots of treatments available and new drugs coming out all the time."

EPILEPSY Bereaved, PO Box 112, Wantage, Oxfordshire, OX12 8XT. Bereavement support line 01235 772852 (answerphone, but your call will be returned)

BRITISH Epilepsy Association, Anstey House, 40 Hanover Square, Leeds LS3 1BE. Tel: 0113 243 9393. Helpline 0800 309090.
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Article Details
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Title Annotation:Features
Author:Palmer, Jill
Publication:The Mirror (London, England)
Date:May 22, 1998
Words:757
Previous Article:`FAILED' OP SAVED MY BABY.
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