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Epilepsy is one of the most common medical conditions in women of reproductive age. It has been estimated that more than 1.1 million women with epilepsy in the United States are of childbearing age. With a birth rate of 3-5 per 1000 births, approximately 24,000 babies are born to women with epilepsy each year.

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Women with epilepsy have a number of unique concerns during pregnancy. Nevertheless, the overwhelming majority of these women will have a normal baby and the pregnancy will not significantly affect their epilepsy. Using strategies to lessen risks will promote a good outcome for mother and baby.

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What are the risks of seizures during pregnancy?

Seizure frequency fortunately declines or remains the same in the majority of women during pregnancy.

• Yet in 15% to 30% of women, there may be an increase in seizure frequency, most often in the first or third trimester.

• The increased seizure frequency is not predictable by the type of seizures the woman has, how long she has had epilepsy, or even the presence of seizures in a previous pregnancy. Even having catamenial epilepsy, seizures occurring with the menstrual cycle, does not predict whether the woman will have more seizures during pregnancy.

• A number of factors have been suggested as possible triggers for these seizures, including hormone changes, water and sodium retention, stress, and decreasing blood levels of antiepileptic medications.

• Not enough sleep and not taking medications as prescribed may be the most important factors that women with epilepsy can control, along with consulting her neurologist during this time.

• There is good news though! Women who are seizure free for the 9 months prior to pregnancy have a very high chance of remaining seizure free during pregnancy!

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What other risks may be associated with seizures?

Having seizures during pregnancy can cause injury or problems for the mother and child. The extent of risks are associated with seizure type. 

• Focal (previously called partial) seizures probably do not carry as much risk as generalized seizures. 

• Yet focal seizures can secondarily generalize. These generalized seizures (especially tonic-clonic ones) carry more risk to both mother and baby.  

• These risks include trauma from falls or burns, increased risk of premature labor, miscarriages, and lowering of the fetal heart rate.

• Getting and keeping good seizure control during pregnancy is crucial. Most epilepsy specialists feel that the risks from seizures in the mother during pregnancy are greater than the risks from seizure medication

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What are the risks of seizure medications during pregnancy?

• The risk to the developing baby from anti-epileptic drugs (AEDs) taken during pregnancy is primarily that of congenital malformation or birth defects. In the general population, there is a 2% to 3% occurrence of congenital malformations that cannot always be predicted or prevented. In women with epilepsy, the risk is doubled to about 4% to 6%, but overall remains low.

• Risks to the developing baby may be greater when more than one type of medication is used and with a higher dose of medication.

• There clearly is a genetic role, with a previous pregnancy or family history of a congenital malformation raising the risk during the current pregnancy. Genetic counseling is needed in this circumstance.

• The most common malformations include cleft lip and cleft palate, which most often can be corrected surgically. Cardiac and urogenital defects also occur. Research is ongoing concerning the risks for developmental delays.

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Which AEDs have the greatest risks?

There is limited information available on our new antiepileptic drugs and only slightly more on the classic antiepileptic drugs. Given available information, it is recommended that the most effective drug with the fewest side effects be used.

Pregnancy registries have been established to help gain information. All pregnant women with epilepsy are encouraged to enroll in the North American Anti-Epileptic Drug Pregnancy Registry prior to having the initial pregnancy screening to help add to our knowledge base. Women outside North America are encouraged to enroll in their pregnancy registry via their neurologist.

While most of our anti-epileptic drugs can be and are used safely, some carry increased specific risks.

Valproate or valproic acid (VPA):

• When VPA is used in the early days of pregnancy, there is a 1% to 2% risk of neural tube defects (lack of spinal cord closure) and an overall 10% risk of any major congenital malformation in newborns.   

• The NEAD study found that children of women taking valproic acid during pregnancy had children with lower IQ and an increased risk of autism.

• All of these risks are worse when higher doses of valproate are used.

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What can help lower risks or problems for the baby?

• The risks of major birth defects is decreased in the general population when women take folate before the time of neural tube closure early in the first trimester.

• Although it may not be as protective in women with epilepsy, folate should be taken daily prior to becoming pregnant since most women do not know they are pregnant until after the time of neural tube closure (24-28 days after conception).

• A daily multivitamin containing 0.4 mg folate, as well as an additional 1- to 4-mg folate supplement, is recommended for all women taking AEDs who are of childbearing age.

• Selenium and zinc, contained in a multivitamin with minerals, also may be of some benefit.

• Vitamin K may be given to women taking enzyme-inducing AEDs in the last month of pregnancy to prevent rare bleeding complications in the newborn.  Also, children born to women taking these medications should be given vitamin K (usually 1 mg IM)  at the time of birth. 

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Most importantly, women should get accurate information prior to and during pregnancy.

• If antiepileptic drugs are not needed, multiple medications are being taken, or medications are given at high dosages, changes should be considered with a neurologist prior to a planned pregnancy. The lowest possible dose of seizure medication that will control seizures is recommended. Being on a single drug will decrease the risk of birth defects and result in fewer drug interactions, fewer side effects, and improve compliance.

• Monitoring drug levels is also very important. Antiepileptic drug levels should be checked throughout the pregnancy and following delivery. The levels of AEDs decline during pregnancy, with some being more affected than others. Dosage adjustments may be needed. Since the levels then rise following delivery, monitoring in the post-partum period is also needed to minimize side effects.

• Monitoring the baby with maternal serum-alpha-fetoprotein testing and a high resolution or level II ultrasound should be performed by the obstetrician.

• Epilepsy is not an indication alone for a cesarean section, and most women deliver vaginally.

• While AEDs are present in breast milk, breastfeeding is encouraged. Breastfeeding can generally be done safely, since the baby has been exposed to these drugs throughout the pregnancy and the absolute amounts of drug are low. Strategies such as taking seizure medications immediately after a feeding should be considered to lessen the amount of drug in a feeding. Breastfeeding is generally safe and recommended for its important benefits to the infant.

• Caring for the baby can also be a concern. Changing diapers on the floor and bathing the infant with other adults present or with a sponge bath are some useful strategies.

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More tips to remember:

• Seeing the doctor before becoming pregnant, keeping regular appointments, and checking antiepileptic drug blood levels during pregnancy are recommended.

• Taking the appropriate medications as prescribed, as well as having adequate rest and sleep are of utmost importance.

• Paying attention to nutrition with adequate weight gain and taking a multivitamin and additional folate before, during, and after pregnancy are needed.

• Avoiding cigarettes, alcohol, and caffeine are important for all women during pregnancy.

• Clearly anything that can affect a person's fertility (ability to bear children) or health outcomes of mother and baby during pregnancy are important consequences of epilepsy. Both men and women should be aware of these concerns and see an epilepsy specialist if these risks pertain to you.

• Keeping all these factors in mind, the overwhelming majority of women with epilepsy will have a normal healthy baby.

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Financial Planning

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Everyone needs to do this, whether you have epilepsy or not. Yet if you or a family member have epilepsy, looking at your family finances is even more important. You need to think about the financial needs of the person with epilepsy as well as the rest of the family. Figure out priorities, identify gaps, and get help to fill those gaps. Consider this....

• If you have epilepsy and are working, does having epilepsy affect your job and your income? Do you have a backup plan for what to do financially if you can't work?

• What are the resources if you can't work? Are you eligible for disability? Will this meet your needs?

• If your spouse, partner or parent has epilepsy, if they can't work how will that affect the family's needs and financial stability? Do you have a backup plan?

• If your child has epilepsy, how does this affect your family finances? Consider extra care and services they may need. What out of pocket expenses will you have?

• If any family member has epilepsy, does that affect your ability to work? Do you need to take time off to care for your family member? What impact will that have? What additional costs to you will there be?

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Why do I need to plan my finances?

 

• You or someone you love has a chronic health problem.

• It's likely there will be out-of-pocket health care expenses.

• Depending on the severity or type of epilepsy and associated conditions, there may be other health needs.

• Epilepsy and other health problems can affect a person's ability to work and care for themselves. Other services and  help may have a cost too.

• Epilepsy can be disabling at times. You may need to find out what resources are available for the family member who is disabled.

• It's important to think about the present, but plan for the future. You may not know what direction or course the epilepsy may take over time.

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Travel Planning

 

Taking vacations and traveling is part of everyday life for many people. Most of us will travel to a vacation spot or visit family at some time during the year, while others may travel for work or other obligations. Adults and children with seizures may have special questions and concerns about types of travel, safety issues to consider, and how to manage seizures safely and appropriately when traveling or in unfamiliar situations.

This section will help people plan in advance for vacations and travel in relation to their own particular seizure experiences, risks and concerns. Ideally, advance planning will take the uncertainty and worry out of traveling and leave time for fun and relaxation. Use this content to help tailor your travel plans and teach others how to respond to your seizures safely and appropriately. We hope that being prepared will help you prevent seizure emergencies, stay safe, and have fun during your travels.

Use this list of questions to help you assess your risks and needs. Will your seizures affect where you want to go and how to get there? Then talk to your doctor for his or her recommendations and guidance. You’ll also want to schedule an appointment with the doctor or nurse to get prescriptions or medical forms updated before traveling.

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Where are you going and how long will you be there?

If you’re traveling for work, you may not have a choice of where to go. Yet if you are planning a vacation, think about where you are going in relation to your seizures. Is it a realistic place to visit, or will you be limited by your seizures once you arrive? If you can’t drive, consider a resort where you won’t need to leave the vacation spot or make sure that other transportation is readily available. If you’ll need to travel around once you arrive at your hotel, do your homework on accessible forms of transportation.

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Are you traveling alone or with other people?

If you (or your loved one) have frequent seizures, or seizures in which injury may occur, travel with someone who knows about your seizures and what to do if problems arise. If you must travel alone, this may affect where you are going, how to get there, and types of precautions you may need to take.

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What types of seizures do you have and how often do they occur?

People with seizures that do not affect their awareness or consciousness will have different concerns than people who have tonic-clonic or focal impaired awareness (previously known as complex partial) seizures. People who may be confused or need to walk around during or after a seizure may have difficulty if this type of seizure occurs on an airplane. Moving around is usually restricted on a plane and usually can't be done safely.

If you tend to have clusters of seizures or long seizures, think carefully about plans that call for lengthy travel times and how you can get help if seizures occur. Traveling by airplane offers limited in-flight medical help and may not be a safe idea for people with these risks. Consider how likely you are to have seizures while traveling and plan ahead using your Seizure Action Plan.

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Have you updated or created a Seizure Action Plan?

Seizure Action Plans (also called seizure response plans) are forms that you can personalize about what to do if you or a loved one has a seizure. Carry this form with you all the time and make sure key family members or friends have one. Take it with you when traveling so others will know what to do when you have a seizure. On Seizure Action Plans, include the latest information about:

• Your type of seizures and what they look like

• Any triggers

• Medicines you take daily

• Medicines or device used as a rescue therapy. A rescue therapy can be used to help stop cluster seizures or seizures that are different from your typical ones. Your healthcare provider may recommend using it after a certain length of time or in other special circumstances. Make sure you list how and when to use the rescue therapies on this plan

• What to do when you have a seizure

• When emergency help may be needed

Download a fillable Seizure Action Plan

• Seizure Action Plan (General, English, Fillable)

Learn how to make a Seizure Action Plan

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What triggers your seizures?

Traveling can be stressful and lead to frequent disruptions in sleep schedules, changes in eating habits, or changes medication times. Think carefully about your seizure triggers and how to manage these or prevent them from occurring in the first place!

• Make sure you plan time to rest, rather than being on the go all the time. This may be especially important for families with young children.

• If you or your child are photosensitive, be careful when visiting amusement parks, particularly at night – there can be lots of flashing lights and excessive stimuli that can trigger seizures.

• If you are outdoors a lot or just have a busy schedule, make sure you drink and eat regularly.

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What are your safety concerns?

Think about your mode of transportation as well as your destination in regards to safety. Then sit down with your doctor, nurse and family to plan how to prevent injuries and make sure the trip is fun and safe! People with seizures should be able to participate in most activities. However, activities that involve significant safety risks, such as climbing high places, flying, and parachuting, are not recommended and can pose significant safety risks. Other activities might be possible with practical safety precautions and having a buddy. This is especially important for water sports and swimming.

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Can you drive?

If you can’t drive, then ideally you’ll be traveling with others. Talk to your doctor, nurse and family about managing seizures on other forms of transportation and if you can do this safely.

If you are legally able to drive, plan plenty of time for breaks, don’t forget your medicine, and don’t try to push it when you are tired! Put safety first, even if your trip will take longer than anticipated. Read about the different types of travel to see what is best for you.

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What are the health care resources at your destination?

Think about where you are going in relation to what you’ll need.If you are traveling to a resort or city, you’ll probably be able to find a pharmacy, doctor or hospital easily. However, if you are traveling to rural or remote areas, you may not have access to these resources at all or may need to travel just to find a doctor. This may not be wise for people with frequent seizures or who are likely to run into emergency situations. For others, making sure you have adequate supplies of medicines and someone with you may be all that you need.

Also make sure you check out your medical insurance coverage before you travel. Find out if you’ll be covered, and if there are specific instructions to follow should you need health care while traveling.