The complexities of living with epilepsy and questioning what the future holds are explored in the December 4, 2014 issue of Neurology Today. Jamie Talan, a journalist at the publication, reports a study presented by Dr. Anne T. Berg of Northwestern University at the American Epilepsy Society annual meeting in December, 2014. This same question—what does the future hold in epilepsy?―is juggled by the newly diagnosed third-grader Conner Golden and his family in my epilepsy novel, DINGS (ISBN 9781626463042).
The experience of neurologists is that children who rapidly become free of seizures once an anti-convulsive medication regimen is begun usually remain seizure-free while they are on the medications. However, predictions of continued seizure cessation are less reliable once medications are stopped.
The study reported by Dr. Berg included six hundred thirteen children aged from under one to fifteen years who had any form of epilepsy. It was carried out by researchers at Yale and Northwestern University beginning in 1993. Among the six hundred thirteen, five hundred sixteen of these children were followed at least 10 years; on average they were monitored for approximately seventeen years. A large percentage did well over the long term. About one-third of the six hundred thirteen was free of seizures within 2 years of the diagnosis and they were eventually able to stop their medications. Just one-quarter of that group which stopped medications were seizure-free for 5 years when the study ended. Twenty-five percent of the participants had seizure control, too, but only when they continued anti-convulsants. A further sixteen percent of the group continued to have seizures despite anti-convulsants but this group tended to have other neurological conditions complicating their epilepsy.
Among the participants who were followed at least 10 years and who had been seizure-free for at least a one year period, fifty-two percent experienced a relapse. The researchers concluded that short-term remission of seizures did not guarantee long-term remission. Many reasons accounted for relapsing-remitting seizure control, including stopping anti-convulsant medications.
Dr. Jacqueline A. French, a leader in epilepsy research, is quoted in the above Neurology Today article: “Neurologists have believed that they could stop medication if a patient was seizure-free for two years and that they would be fine for the rest of their lives […] but this is not the case. Two years may be too short [a time period] to determine whether a child will have problems with epilepsy again. We still don’t have a way to know which children will relapse.” Dr. Patrick Kwan, chair of neurology at the University of Melbourne and head of epilepsy at the Royal Melbourne Hospital in Australia commented on childhood epilepsy in the publication: “The data suggests that relapsing-remitting pattern of epilepsy control is not uncommon in children. This should be conveyed to patients when counseling them on prognosis. We need more studies […].”
In conclusion, remission of seizures during the first two years of treatment is a favorable predictor of epilepsy-control but long-term future seizure-free life without anti-convulsants cannot be accurately foretold.
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. DINGS is his first novel. It is a mother’s dramatic story that teaches epilepsy.