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                        and Epilepsy Registry: 1-800-232-2334

Lamotrigine Pregnancy Registry: 1-800-336-2176.

Antiepileptic Drug Pregnancy Registry: 1-888-233-2334
Massachusetts General Hospital/Harvard Medical School

If you are pregnant, and take antiepileptic drugs (AEDs), register with the AED Pregnancy Registry

What is the purpose of the Registries?
At present, we lack information about the relative safety of specific antiepileptic drugs (AEDs) during pregnancy. Medications are generally avoided by pregnant women, but without medication, women with epilepsy are at risk of seizures. The Registry, as its name implies, registers or enrolls women (over the telephone) who are pregnant and taking AEDs to find the answers. As more women register and report the outcome of their pregnancy, the researchers will be able to identify the safest AEDs for seizures during pregnancy and also determine how safe the newer AEDs are.

Who should participate in the Registry?
Women who are pregnant and taking AEDs for any reason.

When should I call the Registry?
As early in your pregnancy (1st trimester) as possible. If you are already in your 2nd or 3rd trimester, however, you can still participate in the Registry.

How do I register?
By calling. Questions the Registry coordinator will ask you, as an example, are your age, the date of your last menstrual period, and what AEDs and vitamins you are taking.

Why should I participate in the Registry?
Because we need you! To quote a woman who recently enrolled, "You can't just find someone on the street who is pregnant and see if they'd be willing to take an AED, so that when you decide to have a baby you'll know the drug is safe and won't cause birth defects." By enrolling, you will help women in the future have the best chance of a healthy pregnancy and a healthy baby.

Will enrolling in the Registry take a lot of time?
Enrolling in the Registry takes very little time. Your initial phone call to the Registry will take less than 10 minutes. At seven months, there is another telephone interview, which will last approximately 5 minutes. After your baby is born, there will be a brief 5-minute follow-up interview.

What about confidentiality?
The researchers understand how important confidentiality is to you. A coding system is used and, therefore, your name and address, for example, are not part of the Registry database. No persons will be identified who have participated in the Registry.

What can I do right now to increase my chances of having a healthy baby?
Over 90 percent of women with epilepsy have healthy babies. The best thing you can do for your baby is to take good care of yourself - keep regular appointments with your doctor, take your seizure medication, and get proper amounts of food, sleep, and exercise. If at all possible, before you become pregnant, begin taking folic acid (0.4 mg. per day). Take prenatal vitamins with folic acid regularly throughout your pregnancy. Enrolling in the Registry will give you the satisfaction of knowing that you are helping women have an easier time in the future.

When will we know more about pregnancy and AEDs?
Unfortunately, research can take many months - even years. The more women like you who choose to enroll in the Registry, the sooner we may have the answers.

Case Reports of Women with Epilepsy 

Another site:

  Pregnancy and epilepsy

Women with epilepsy can have healthy children, and over 90% who decide to have children do deliver healthy babies. However, the risk of serious birth defects, stillbirth, and seizure problems in the child is higher for women with epilepsy.

The anticonvulsant medications used to treat epilepsy have been shown to increase the risk of birth defects, regardless of whether the mother has epilepsy. However, stopping medication treatment is not always the best solution. Having seizures during pregnancy can also harm the baby, and pregnancy causes changes in your body that may make you have more seizures than usual. (Some types of seizures are more dangerous to the fetus than others.)

The following information is based on guidelines recommended by the American Academy of Neurology.

Before you become pregnant

If you can, talk to your doctor before you become pregnant about how to handle your treatment. Seizures or seizure medication may cause damage to the baby very early in your pregnancy, before you even know that you are pregnant. Your doctor will help you consider whether potential seizures or continued use of antiepileptic medications poses greater risk to your baby.

If you are not yet pregnant but are planning to become pregnant, stopping medication might be an option if you have been seizure-free for several years. Your doctor may suggest a trial run without the medication before you become pregnant. Experts advise that this trial run take place at least 6 months before the pregnancy so that you and your doctor can see the results of stopping your treatment. If you begin having seizures, you may need to go back on medication.

While you are pregnant

If you need to stay on medication during your pregnancy, you may be able to make some changes in your treatment that reduce the risk of birth defects. These changes may include:

·          Switching to a medication that is safer for the baby.

·          Taking a single medication.

·          Decreasing the medication dosage. (Some women may have to increase their medication dosage during pregnancy because they have more seizures than they normally do.)

·          Taking folic acid, vitamin K, or other supplements before you conceive and during certain times of your pregnancy. (Folic acid reduces the risk of some birth defects. Some antiepileptic medications can cause a temporary blood disorder in newborns that makes it difficult for their blood to clot normally; vitamin K can help prevent this problem.)

Do not change, reduce, or stop taking your medication while you are pregnant without first consulting your doctor. You may put yourself and your baby at greater risk if you do.

Other concerns

·          During your pregnancy, you may need more frequent checkups to monitor the baby's condition and blood tests to monitor your drug levels.

·          Once your baby is born, he or she may need to take extra vitamin K for a short period of time.

·          Breast-feeding while you are taking antiepileptic medication is not discouraged because of the positive effects of the breastfeeding itself, however little is known about the long-term effects of infant exposure to antiepileptic drugs by this route, so talk to your doctor about any concerns you have. If you are taking a barbiturate (such as phenobarbital) to control your seizures, breast-feeding may make the baby drowsy because the drug may get into your breast milk.

If you have epilepsy and find out that you are pregnant, consult your doctor immediately. Do not stop taking your medication without first talking to your doctor.