Epilepsy Foundation Holds Women's Health Forum to Educate About Anticonvulsants and Pregnancy

By Adam Modzelesky
between Us Staff
Posted: August 17, 2005

The Epilepsy Foundation held its first Women's Health Forum June 21, 2005 . The forum addressed lack of knowledge regarding the use of anticonvulsants by women during child-bearing years.

The campaign's primary purposes are to urge women and their physicians to become more aware of emerging trends on the relative risks and benefits of widely prescribed anticonvulsant medications, and also to urge American women to sign up with the North American Pregnancy Registry so that more can be learned about interactions of these medications during pregnancy on the mother and her unborn child.

The Women's Health Forum consisted of several distinguished neurological experts, as well as brought together federal agencies and national voluntary health agencies committed to improving healthcare for women.

A panel of physicians who are experts in the use of anticonvulsants by women in this age group, as well as experts in current and emerging research, convened at the forum. The panel included: Gregory L. Barkley, M.D., of the Henry Ford Hospital and chair of the Epilepsy Foundation's professional advisory board, Cynthia Harden, M.D., of the New York-Cornell Medical Center C omprehensive Epilepsy Center , Lewis B. Holmes, M.D., professor of pediatrics at Harvard Medical School and chief of the genetics and teratology unit, pediatric services at Massachusetts General Hospital, Kimford J. Meador, M.D., a Melvin Greer professor of neurology at the University of Florida, Page B. Pennell, M.D., an associate professor of neurology and director of the Emory Epilepsy Program at Emory University School of Medicine, and Blanca Vazquez, M.D., a member of the Epilepsy Foundation's professional advisory board and director of clinical trials at New York University Medical Center.

Pregnancy Risks: An Overview

First and foremost, it is important to point out that the vast majority of women who take anticonvulsant medications deliver healthy babies – of this group, only 20 percent have epilepsy.

Like with any therapeutic drug, taking an anticonvulsant medication when planning for and during pregnancy is not entirely risk-free. Serious birth defects can occur, including congenital malformations such as heart, spinal cord and cleft lip/cleft palate abnormalities. Research has also documented a connection between anticonvulsants and osteoporosis, weight changes and a cluster of endocrine effects.

Unfortunately, most of the data collected in this area pertains to studies performed on "older" drugs, that is, drugs approved prior to 1980. These drugs include carbamazepine, phenobarbital, phenytoin, primidone and valproate. Emerging data is showing that newer drugs have fewer side effects, but more data is needed to provide statistically significant trends.

Medication Strategies and Choices

One of the first questions asked of doctors by prospective mothers taking anticonvulsant medication is: Should I stop taking my medication so I can eliminate any risks of my baby having a birth defect?

As logical as that choice sounds, it could actually cause more harm than good. Despite the uncertainty surrounding which of the various medications will result in fewer negative birth effects, doctors will rarely, if ever, consider discontinuing medication use. They maintain the notion that controlling the mother's seizures is paramount because having a seizure while pregnant is physically risky for both the mother and the child.

But, understandably, lingering memories of recent research reports are often hard for women to ignore. For example, recent research has shown that valproate is not the ideal "first choice" drug for treating a pregnant woman's seizures. However, valproate has proven to be highly effective at treating epilepsy and other disorders. For some women, it might even be the only drug that provides adequate control of their condition. Because of this, doctors are quick to reiterate that the patient's well-being is the first priority, and that the vast majority of women who take this medication during pregnancy deliver healthy infants.

Even though doctors largely wish not to have to discontinue medication use, it can be an option in some cases. Patients are urged to keep in mind that before they stop taking medication, a doctor should first determine if it's a viable option. A clear and concise strategy for weaning a patient off medication should be outlined between the patient and doctor. This is critical to the mother's wellness and for maintaining control of her condition. Discontinuing medication use should not be a decision taken lightly, and the aforementioned strategy to do so should be developed with the utmost care.

So what are some of the better strategies currently in place? Doctors much prefer the following: reducing anticonvulsant drug dosages to as low a dose as possible, avoiding use of more than one anticonvulsant at a time and recommending that women take vitamin supplements containing folic acid prior to and during pregnancy.

Plan Your Pregnancy and Consult a Physician

There's no denying the fact that women must make difficult choices when trying to balance the values of their treatment and the potential consequences. However, it should come as some comfort that the chances of a woman who takes anticonvulsant medication giving birth to a healthy baby are at least 90 percent. And it should be even more comforting that those odds can be improved if a few simple steps are followed.

The Epilepsy Foundation believes the best way for women to maximize their chances of having a healthy baby is to educate themselves and become effective self-advocates in their own treatment.

As such, it is recommended women take the following steps: work with your doctor, talk with your doctor about specific risks and benefits, plan your pregnancy with your doctor before you conceive, take a multivitamin containing folic acid before and after conception, enroll in the North American Pregnancy Registry if you become pregnant, make sure your doctor monitors your anticonvulsant blood levels, do not reduce or stop taking your medication without your doctor's approval, ask about ways to prevent long term effects, ask for solutions to weight gain problems, and stay on top of emerging information about anticonvulsant drugs.

Women can find information regarding the latter at the Epilepsy Foundation's website, as well as the websites for the American Academy of Neurology, the American Epilepsy Society and the North American Pregnancy Registry.

North American Pregnancy Registry

The North American Pregnancy Registry is one of four world-wide registries serving as an important source of information as to how anticonvulsant drugs affect pregnancy. As stated, one of the campaign's goals is to increase participation in this vital data bank. The Epilepsy Foundation urges women to enroll so that more data can be collected about the post-1980 approved medications.

Lewis B. Holmes, M.D., one of the forum's panelists, is the registry's director and principal investigator. In the recent past, Holmes said that in order for the registry to report correct data, more women must be encouraged to join. To register, call (888) 233-2334 .

The Women's Health Forum was made possible through an unrestricted educational grant from the pharmaceutical company GlaxoSmithKline, and the comprehensive Call to Action document prepared by the panelists which outlines these pregnancy issues will be available on the Epilepsy Foundation's website in October 2005.