Q:Despite the fact that doctors have got me diagnosed as epileptic, I know I am not and that the underlying cause of my seizures is anti-convulsants. When I put together certain factors to test myself, I realized that I may have been trapped in a vic
A:Thank you for your letter and the highly informative articles you sent, which we'll elaborate for the benefit of our readers. In one, experts at Birmingham Children's Hospital concluded that about half of cases of so called juvenile epilepsy are wrongly diagnosed (The Observer, December 1992). This is significant, as more than half the 340,000 epilepsies in Britain are believed to begin in childhood.
Dr Michael Prendergast, consultant child psychiatrist at the Children's Hospital, examined 311 children referred to the hospital for suspected or diagnosed epilepsy and discovered that 138, or 44 per cent, of the children didn't have it.
His results are nearly identical to those of a Scottish study completed in 1896 by the Royal Hospital for Sick Children in Glasgow. In that study, Dr John Stephenson, the hospital's consultant pediatric neurologist, found that 47 per cent of the children referred there didn't in fact have epilepsy.
Also for the benefit of our readers, please allow me to recount your story. Jacqui, now 36, was diagnosed as having epilepsy when she was 11, after suffering several blackouts. She was immediately placed on anti-convulsants, although the first convulsion didn't appear until after she'd been on the drugs. She has spent years battling the myriad of drug side effects, including blackouts and convulsions. From 1988, when she began reducing the dosage of the drugs she was taking, the seizures have correspondingly reduced, from 200 to several dozen.
Although doctors these days claim to be more cautious about automatically handing out anti-convulsant drugs to children with mild blackouts and seizures, the conventional wisdom among most doctors still is that, until suppressed by drug treatment, seizures will recur, and that drug treatment can affect the course of the disease, reducing the risk of early epilepsy turning into an intractible disorder.
This viewpoint does have some preliminary evidence, according to a review paper by E H Reynolds, consultant neurologist at the Centre of Epilepsy in Maudsley Hospital in London. Reynolds quoted several studies showing that the more seizures, the worse the prognosis (Epilepsia, 1989; 30: 648), and that patients with single seizures did better at least over the medium term when they got drugs, compared to those who'd been given placebo or had treatment delayed (Clin Neurol Neurosurg 1992; 94 (suppl): S61-3); Neurology, 1993; 432: 478-83).
Nevertheless, in that same issue of the British Medical Journal (January 21, 1994) David Chadwick, professor of neurology at Walton Centre for Neurology and Neurosurgery in Liverpool, presents a strong counterargument for holding off early treatment. For one thing, he argues, epilepsy is an umbrella term referring to a group of disorders, and not a single, homogeneous disease. In some cases of epilepsy, such as "benign rolandic epilepsy" in children, where seizures only affecting the face, throat and arm occur during sleep, there is strong evidence that the seizures stop by themselves by mid adolescence. Furthermore, the preliminary data suggesting that people are better off getting drugs after early treatment is far from "definitive".