Ask the Expert (July 2003):
Family Planning & Pregnancy

Featuring: Georgia D. Montouris, MD

Introduction

Women with epilepsy may wonder what their chances are of having a healthy baby. They can relax with the knowledge that their chances of having a normal, healthy child are greater than 90 percent. However, there are some increased risks for women with epilepsy that they should consider before getting pregnant, if possible. Both the neurologist and the gynecologist/obstetrician need to be involved in reviewing medication and any potential changes prior to the beginning of a pregnancy.

What should a woman with epilepsy do to get ready for a pregnancy? She should be in good general health and pay attention to nutrition before and during pregnancy. A regular schedule with adequate exercise and appropriate rest will keep a pregnant woman physically fit and may help manage stress. It is important to take vitamins with folic acid prior to and throughout pregnancy, to reduce the risk of certain kinds of birth defects. Since many of these problems occur very early in pregnancy, it is wise to start taking folic acid before becoming pregnant.

How can pregnancy affect seizures? Most women will see no change in their seizures. One quarter to one third of women with epilepsy who become pregnant will have increased seizures during their pregnancy despite continued use of antiepileptic medication. During pregnancy, concentrations of seizure medication in the bloodstream may change or decrease, putting a woman at greater risk for seizures. The physician may need to check blood levels of medication more often, and may need to adjust the dose.

Women may wonder if it’s true that medication taken for seizures may affect their children. Yes, there may be some increased risk to children of women with epilepsy who are taking seizure medications. In the general population there is a 2 to 3 percent chance that a child will have a birth defect (also called a congenital malformation). In women with epilepsy, this risk is increased to 4 to 8 percent. In general, there seems to be higher risk if a woman is taking more than one seizure medication, particularly at high doses.

But there are other risks, to both mother and developing child, from uncontrolled seizures. Most women with epilepsy should continue their seizure medication, and whenever possible, take a single antiepileptic drug at the lowest dose that provides seizure control. It is important to work with the health care team to make the best decisions about medications during pregnancy. Remember, women should never stop taking their antiepileptic drugs or change the doses without the advice and the supervision of the doctor.

Other problems to consider are that women with epilepsy are more likely to have morning sickness and vaginal bleeding during pregnancy. There is an increased risk for early labor and delivery. Sometimes labor does not progress normally and more women with epilepsy need to have cesarean sections to deliver their babies than other women. There is a small risk that the baby will develop a bleeding problem in the first 24 hours after birth. Women with epilepsy are often given oral vitamin K supplements during the last month of pregnancy to lessen the chances of this happening to their babies.

In summary, just like any other pregnancy, good pre-natal care and good communication with the medical team can increase the chances of a happy, healthy blessed arrival.

Questions and Answers

My husband and I both have epilepsy. What are the chances a child of ours would also have epilepsy?

Increased risk of transmission of epilepsy depends on type- i.e., some are genetically transmitted such as Juvenile Myoclonic Epilepsy. The transmission risk is usually related to the mother with epilepsy (about 6 percent) and less with the father(2.4 percent). These statistics come from a study done in Rochester, Minn., in 1988. Unfortunately not much more is known at this time. Overall, transmission rates are low but the risk exists. In addition, the age of onset of epilepsy in the parent also plays a role. Cause of the epilepsy may also play a role.

I just had a baby and am concerned that the medication I take for my seizures (Trileptal) is being passed to my baby through my breast milk. Can you tell me what effect this will have on my baby?

As for breastfeeding – all seizure medications pass into the milk. Medications such as phenobarbital or mysoline or benzodiazepines, (diazepam, lorazepam) do cause some problems, specifically poor suck, sedation and as such, babies have poor feeding because of these factors. As the medications pass from the mother through the placenta, the baby has been exposed to all these drugs throughout the pregnancy. The amount in milk is usually much less than the amount that passed into the baby during pregnancy. Unfortunately, we do not have all the answers especially with the newer drugs, since they are so new. We cannot guarantee anything, but overall, given the previous exposure throughout the pregnancy, breastfeeding is not contraindicated.

My husband has epilepsy and is currently taking medications to control his seizures. What are the risks to a baby conceived while the father is taking antiepileptic medications?

The husband's medications would not play a role. The father's epilepsy as far as a risk of the baby having epilepsy is low - about 2 percent.

I am 27 years old and was diagnosed with Juvenile Myoclonic Epilepsy when I was 19. I have been treated with Tegretol, Epilim and, over the last three years, Lamictal. I take 300mg of Lamictal everyday and my seizures have gone away. I am in good health and am driving, etc. My husband and I are thinking about starting a family (I am not going to reduce the amount of Lamictal that I take now or during pregnancy) but I am currently taking 500mg of folic acid each to prepare. Is there any other nutritional supplements/foods (minerals/vitamins) that would be good to take before and during pregnancy for someone with epilepsy? Are there any that I should avoid? Any tips that you could give would be gratefully received.

Juvenile Myoclonic Epilepsy and Lamictal. Just a word on the issue of Lamictal during pregnancy – blood levels should be monitored as Lamictal levels like with other AEDs drop during pregnancy and adjustments need to be made. Lamictal levels can drop substantially, so levels really need to be monitored. With Juvenile Myoclonic Epilepsy, one major trigger factor for seizures is sleep deprivation which can occur during pregnancy and especially in the immediate postpartum. Be sure to get plenty of rest-even once the baby is born, have someone take a night feeding so you can get the needed sleep. Use caution after baby is born, if you suffer from myoclonic jerks and grand mals, you may want to change baby on blanket on floor, don't carry baby around, at least for the first couple of weeks, especially if your Juvenile Myoclonic Epilepsy has myoclonic jerks – levels climb after baby is born and you want to stabilize your dose. During the last month of pregnancy, 10mg of Vitamin K taken daily is recommended to avoid the hemorrhagic syndrome of the newborn secondary to AEDs. This condition is known to occur with enzyme inducing drugs. Lamictal is not one of these, however, I personally prescribe this to all my patients whether on new or old drugs, since we don't have all the answers with the new agents. You may want to discuss this with your neurologist and obstetrician.

Are there conflicts in the results of over the counter pregnancy tests and any antiepileptic drug?

Not to my knowledge.

I'm 8 weeks pregnant and trying to find both an OB/GYN and neurologist who will be sensitive to my concerns and needs. Am I being over cautious if I make a big deal about coordination between neurologist & OB/GYN? My seizures are controlled with medication. Everyone's telling me to not worry ... but I'm still nervous about making it through the pregnancy and delivery. I told an OB about my concerns and desire for him to be in contact with my neurologist in case something comes up or my health changes, and his response was that they would expect a normal pregnancy and only coordinate if something goes wrong. I still would want there to be a plan in place in order to be more proactive about it. Should I stop seeing this OB? He seems very competent otherwise. I just don't know how this normally works and if I'm making a big deal about nothing.

You are not being overcautious, but very sensible. I think it is very important that everyone is on the same page. Be sure you keep close contact with your neurologist during pregnancy because levels drop, 30 percent of women with epilepsy have an increase in seizures during pregnancy. There is a need for Vitamin K during the last month of pregnancy to avoid hemorrhage in the baby, etc. OB doctors are usually easy to work with, but it's been my experience, it's the neurologist who contacts them rather than the other way around. You need to be comfortable during your pregnancy. In more than 90 percent of cases, women with epilepsy have uneventful, healthy outcomes. But everyone needs to be on the same page in case something occurs. So I urge you to have your neurologist contact the OB and have them keep in contact.

What can happen to a fetus if the mother has a seizure? Do different types of seizures affect the baby differently? What are the long-term effects, other than birth defects, of children born to women taking antiepileptic drugs? I am currently on Keppra and my neurologist would like to switch me to Tegretol since I am planning on having children in the next year or two. I am 24 years old and started having petit mal and partial complex seizures about three years ago. I have had a couple of nocturnal grand mal seizures. I am trying to decide if the benefits of being medication free outweigh the risks. Any input would be appreciated.

Seizures during pregnancy can be more harmful than the medications. Depending on the type. Grand mal seizures cause falls, injury to the mother and can also cause slowing of the heart rate in the fetus. Reports have also shown that partial seizures can cause slowing of heart rate as well. The risk of birth defects in the general population is about 2 to 4 percent and in women with epilepsy on medication about double, i.e. 4 to 8 percent. Now these statistics are based on the older drugs, Dilantin, Tegretol, phenobarb, Depakote, mysoline. Depakote and Tegretol have the added risk of spina bifida, which is an incomplete closure of the spine. In the case of Tegretol it's about .5 to 1 percent when used in combination and with Depakote, 1 to 2 percent when in monotherapy. The use of folic acid is extremely important in trying to lower the risk of malformations and should be taken well before one plans on pregnancy. It is actually recommended to take folic acid once a women is of child bearing potential, i.e. puberty!! The FDA has classified AEDs into two categories: Class C which is all the newer drugs, stating, that information is available in animals, and appears safe but no information available in humans: whereas, Category D is all the older drugs, and here we know the risks in animals and humans, both of which have shown malformations. The newer drugs seem safer, but we just do not have enough information yet to make a statement about them. Reports have been published noting the outcomes of pregnancies on the newer drugs, but most are case reports. Large numbers of outcomes are needed to have firm statistics. The need to support pregnancy registries is great. Each of the pharmaceutical companies has information on a limited number of outcomes; you can contact them for that information. GlaxoSmithKline, manufacturers of Lamictal, have their own registry with several hundred outcomes , the results look favorable. The same can be said for the other agents, although the numbers reported so far are very small. If taking Tegretol or Depakote, the amount of folic acid should be at least 4mg per day.

I am expecting a baby in six weeks. I am on Lamictal for seizures (600 mg/day currently). Can I breastfeed this baby or will the Lamictal secreted in the breast milk harm him? I keep getting conflicting answers (or no answer at all) from various doctors.

You can breastfeed. The Lamictal will pass into the milk, but at small amounts. As you have taken Lamictal during pregnancy, the baby has already been exposed to this drug. From my own personal experience, a patient of mine on Lamictal considered breastfeeding – we were able to get both blood levels and milk levels from the mother every two hours for one day and noted the amount of Lamictal in milk was much less than in the blood. We do not have all the answers of effects of the newer agents, but given the child's exposure during pregnancy at higher levels, we, as epileptologists do not prohibit breastfeeding.

If a woman has a child with a defect from the medicine, what are the chances that another baby will have the same problem if she gets pregnant again? Is there a higher risk if she's switched to a different drug?

The risk of congenital malformation in women on AED is 4 to 8 percent compared to the general population who has a 2 to 4 percent risk. Some drugs have a higher risk, such as Tegretol and Depakote, with the risk of spina bifida. The risks are the same for each pregnancy. Remember however, it is important to take medication during pregnancy to control your seizures, because seizures themselves carry a big risk. The drug to take during pregnancy is the drug that best controls your seizures and gives you the least side effects. We do not have enough information on the newer agents to determine if indeed they are safer than the older ones. Remember more than 90 percent of women with epilepsy have normal healthy outcomes.

Which antiepileptic drugs have the highest risks to the baby? Which ones have the lowest risks?

All I can say is some drugs carry an extra risk. Tegretol and Depakote, carry the risk of spina bifida in addition to the risk of 4 to 8 percent malformation rate. We do not have enough information on the newer drugs to make a clear statement of safety, the case reports are encouraging but again the results are limited.

Are there any kinds of tests to see who might be sensitive to a drug's risk of defects? I know they don't cause problems for everyone. Is there any way to predict who's more at risk?

One increased risk is if there is a family history of spina bifida, chances are greater than if no family history. Tests are available to determine defects, such as Level II ultrasounds that can be performed looking for any signs of malformation such as oral facial, cleft lip, cleft palate, heart-septal defects, urogenital, spina bifida. Alpha-fetoprotein can be measured by blood specimen. Amniocentesis is also available if required.