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.