Women, Epilepsy, and Sexuality

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Friday, 11 January 2008

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Women, Epilepsy, and Sexuality
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Combating Birth Defects

Though women with epilepsy were once discouraged from having babies due to the health risks of mother and fetus alike, more than nine in 10 of such women now have healthy babies. Nevertheless, there are special concerns to be faced.

Though some women say they would rather go off their medication during pregnancy than risk hurting their fetus, doctors generally advise against this.

"It really depends on the individual," Pack says. "Some women must continue to take their drugs or they will have a seizure, and that could be worse to both the mother and the fetus than not taking the drug. There's a risk of preterm delivery, miscarriage, and decreased oxygen to the brain that can result in permanent brain damage, even death."

On the flip side, there is a chance that some anti-seizure drugs can cause birth defects in the newborn. And it's not a concern to be taken lightly: The anti-epileptic drug phenobarbital went on the market in 1912, but it was not until the 1990s that articles about its harmful effects on the fetus began to appear, says Lewis Holmes, MD, professor of pediatrics at Harvard Medical School and chief of the pediatric and teratology unit at Massachusetts General Hospital in Boston.

Because some seizure medications are known to lower levels of folate, which is associated with birth defects, women of childbearing age should take folate supplements (400 mg per day) as part of a healthy diet.

Holmes, director of the Harvard-based Antiepileptic Drug (AED) Pregnancy Registry, says his group's goal is to detail the risk of birth defects in women taking widely used anticonvulsant drugs. So far, his team has released two reports, the most recent on babies born to 149 women who took the anticonvulsant drug valproate during pregnancy.

About 11% of the newborns developed major birth defects, including heart abnormalities, extra fingers, kidney problems, spina bifida, and clubfoot. In comparison, only 1.6% of babies born to women not exposed to any antiepileptic drug had a defect, according to the study, presented in 2003 the 23rd Annual Meeting of the Society for Maternal-Fetal Medicine.

An earlier report by Holmes, published in the journal Teratology in 2001, revealed an elevated rate of fetal malformations, particularly cleft lip and palate and heart defects, in babies of women being treated with phenobarbital.

And in October, researchers from the U.K. reported significant reductions in IQ scores among children whose mothers took the epilepsy drug valproate during pregnancy. These children's IQs were found to be "in the low average" range.

Holmes urges any woman with epilepsy who is thinking about getting pregnant or who is pregnant to call the AED Pregnancy Registry at (888) 233-2334. "It's important to enroll early -- before you know the outcome of the pregnancy," he says. "And be reassured that your name will not be given to your insurance company or anyone else."

The Bottom Line

If you have epilepsy and are thinking about getting pregnant, here is the experts' advice:

Ask for a referral to a neurologist or an epilepsy specialist.
Ask if you really need to be taking epilepsy medication for the course of your pregnancy.
If you do need to be on seizure medication, try to ensure that you only take one -- not multiple -- seizure drugs during the course of the pregnancy.
Ensure that the lowest effective dose is prescribed.
If possible, avoid drugs like Depakote that have been associated with a risk of neural tube defects.

As for folic acid, "most of us recommend at least 1 mg, and if you're actively trying to get pregnant, up to 4 mg a day," she says. But Holmes is a little less enthusiastic. "Everyone has hoped that 'if you take folic acid, you will avoid babies with birth defects," he says. "That may be true in the case of spina bifida. But the mothers of all of the babies in our study who developed birth defects were taking folic acid. We're hoping higher doses will help, but that is just a hypothesis."

As for epilepsy nurse Shafer, she says she gave birth to a healthy boy 12 years ago. "He was the perfect baby," she says. "He did have an occasional seizure, but they waned this summer. With the proper care, hopefully any couple with epilepsy can have the same fulfilling experience as me."

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SOURCES: Patricia Shafer, RN, MN, past chairman, professional advisory board, Epilepsy Foundation; epilepsy nurse specialist, Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center, Boston. Alison Pack, MD, assistant professor of clinical neurology, Columbia University, New York. Lewis Holmes, MD, professor of pediatrics, Harvard Medical School; chief of the pediatric and teratology unit, Massachusetts General Hospital, Boston. Epilepsy Foundation.