Information for medical professionals

Women with epilepsy have to contend with many unique challenges. It is important that women feel empowered and equipped to discuss issues of concern with their healthcare provider, especially during their childbearing years.

This includes being able to have a safe and satisfying sex life and, if they choose to do so, getting pregnant and having a healthy baby. That means women may have questions about medication and reducing risk when it comes to:

contraception
planning a pregnancy
seizure control during pregnancy (including morning sickness and its implications on medication)
labor and delivery
postpartum, including breastfeeding, postpartum mental health challenges, childcare, and adapting to parenting.

Knowledge and preparation is key to avoiding risk.

Most women with epilepsy are now well-informed about their condition and shared decision-making has been a game-changer in strengthening the doctor-patient relationship.

Nevertheless, women with epilepsy will always need the help, support and advice of you, as their doctor, specialist epilepsy nurse or gynecologist, to remain informed and allay any fears and concerns they may have.

Research on valproate and other ASMs in pregnancy is ongoing, and healthcare providers should stay informed so they can offer the latest advice on the most appropriate ASM for their patients.

See more below on advising women who are:

Not planning a family
Planning a family
Caring for a newborn
Have questions about valproate

Based on real-world findings

Knowledge is key to ensuring the best outcomes for women with epilepsy. To help us identify the type of information that women with epilepsy would value receiving, and the gaps that currently exist in that information, we surveyed almost 900 women across Europe.

Their personal insights were vital in developing this website as well as in creating other support tools to help women with epilepsy have the confidence to talk with their medical care provider, so they can get the support and advice they need.

Not planning a family

Anti-seizure medication (ASM)

Young women with epilepsy often notice their seizure frequency changes during puberty, with hormonal changes affecting seizure threshold and sometimes impacting the blood concentration of their anti-seizure medication (ASM). Peer pressure can be at its strongest at this time and the need to be like everyone else can tempt an adolescent to stop taking their medication.

It is important that young women are assured of how vital it is for them to continue to take their ASMs as prescribed. Their dosage levels may need to be adjusted as their hormones change.

Make sure you emphasize how important it is to speak to their doctor before stopping or reducing their medication. A conversation on the possibility of seizure relapse, status epilepticus and SUDEP (sudden unexpected death in epilepsy) is also valuable.

Contraception

When it comes to finding the most appropriate contraceptive, your advice and guidance is essential to a woman with epilepsy. Women need to know the pros and cons of different types of contraception and possible interactions with their epilepsy medication.

It’s important for women with epilepsy of childbearing age to:

be aware that some ASMs and contraceptive drugs may interact and cause breakthrough seizures or unwanted pregnancy
understand that contraception is vital for women of childbearing age who are taking valproate.

We know from published reports that more than 40% of pregnancies are unplanned, so a conversation about contraception and the importance of preplanning a pregnancy can be reassuring.

Folic acid

In line with global guidelines applying to all women of childbearing age, doctors should encourage women with epilepsy to take a daily, safe dose of folic acid throughout their childbearing years, whether or not they are planning a pregnancy.

Your advice is pivotal when it comes to understanding how important this is, especially for women with epilepsy where there may be additional risks of abnormal fetal development due to their ASMs.

International (EURAP)

United Kingdom

Ireland

European Medicines Agency: information on valproate
- www.ema.europa.eu/en/news/new-measures-avoid-valproate-exposure-pregnancy-endorsed
- www.ema.europa.eu/en/documents/other/summary-ema-public-hearing-valproate-pregnancy_en.pdf
Royal College of Obstetricians and Gynaecologists (UK)
- Epilepsy in Pregnancy: Green-top Guide No 68
Medicines and Healthcare Authority UK – information on valproate
- Patient leaflet
- Doctor leaflet

Planning a family

Planning to have a baby can be a time of worry and concern for a woman with epilepsy. The reassuring help and support of her medical team is especially important at this time.

It’s vital you remind her to continue taking ASMs when she finds out she is pregnant, and to seek medical advice before making any changes to medications prescribed. You should also encourage her to speak to you and her healthcare team well in advance of trying to conceive.

Furthermore, making women aware that their seizures may become stronger and more difficult to control during pregnancy is important.

When trying to conceive, women can be disappointed if pregnancy doesn’t happen quickly. Her medical team’s advice and reassurance can reduce unnecessary stress. It’s also useful if you can make her aware of the need for emotional support and strong support networks while trying for a baby.

1. Will my epilepsy make it more difficult for me to conceive? Or, I’ve found it hard to conceive in the past – are there healthy ways that I can increase my chances of conception?

This is the opportunity to discuss safe fertility-increasing steps that can be taken as part of a preconception plan.

2. What does planning a pregnancy mean?

Encourage any woman with epilepsy to start considering pregnancy at least 12 months in advance so there is time to put the best possible pregnancy plan in place. Good seizure control before pregnancy increases the chance of good control throughout the pregnancy. Factors in this plan should include:

a medication review
efforts to improve seizure control if possible, including exploring seizure triggers and taking measures to reduce seizure risks including from SUDEP
reminders to take daily folic acid
reminders of the need to continue using contraception until they have completed any medication changes and achieved their best seizure control.

3. Can you explain more to me about ASMs, seizures and pregnancy?

Will my seizures change during my pregnancy?
What are the risks of ASM for my baby?
What are the risks of seizures for me and my baby?
What will happen if I have a seizure during pregnancy?

4. Could my baby be born with epilepsy?

Many women with epilepsy worry they can pass it on to their baby. They will value your reassurance that the risk of having a baby with epilepsy is only slightly higher when the mother has epilepsy.

5. Will I have to have a cesarean section?

Women with epilepsy may believe they cannot have a vaginal delivery. Vaginal childbirth is possible the majority of the time, unless a problem occurs during labor and the obstetric team is concerned about the safety of mother or baby. However, in rare scenarios (such as frequent tonic-clonic seizures in late pregnancy) women with epilepsy should be informed that a planned cesarean section may be a safer option for them.

6. Will I be able to breastfeed my baby? Will my ASM pass to my baby through breastmilk?

A woman with epilepsy can be encouraged to consider breastfeeding her baby if you explain that the exposure level to ASMs in breastmilk is lower than the exposure the baby will have experienced while in the womb.

7. I'm pregnant - what now?

Even with a clear and tailored plan pre-pregnancy, women with epilepsy need to know what to expect during pregnancy. This includes information on the change in risk of seizures, status epilepticus, and SUDEP. It is especially important to reinforce the importance of continuing taking their ASMs as prescribed, and not changing or stopping taking medications without consulting you as their healthcare provider.

8. What can I expect now I've had my baby?

Continuation of care is vitally important for all women post-delivery, but especially for women with epilepsy, who may be at increased risk of maternal mortality and SUDEP for up to a year after delivery. Assure new mothers with epilepsy that their health is still a priority, and explain how ASM adjustments, hormonal changes, and sleep pattern changes may affect seizure control during the baby’s infancy.

Caring for a newborn

How to minimize a baby’s exposure to ASMs in breastmilk

If the mother takes her ASM once a day, advise her to take it at the start of the baby’s longest sleep period. This is usually after the bedtime feed
If she takes her ASM more than once a day, she could try waiting until after breastfeeding and then take it immediately. That way, the levels will be at their lowest when it comes to the next breastfeed
Advise her to consider pumping or using formula to supplement breastfeeding. For instance, she might use pumped milk formula for night feeds, so someone else could feed the baby while she had a chance to sleep
Recommend she continues to take prenatal vitamins including folic acid if breastfeeding and/or planning on having another baby.

Safety in the home

From speaking with women with epilepsy who have had babies, it is clear that knowing where to source reliable information on home safety can be invaluable.

Surgeries and clinics are always busy, but if you can, try to find a few minutes to talk about home safety measures. Share the links on this website, which offer excellent advice for mothers, and impart this advice too:

Always change your baby on the floor and not on a changing table
Use sponge baths to clean your baby when alone and only use a baby bath when someone else is present
Always use the straps on any baby chair or rocker. Of course, this applies to all mothers, not just those who have epilepsy
When feeding your baby, try to sit on the floor. Use cushions or pillows for comfort and softness
Never carry your baby around while holding something hot, ironing, cooking, using a hairdryer, or using any other electrical equipment that could cause harm if a seizure was to occur
Not getting enough sleep is a common seizure trigger. Try having someone help with nighttime feeds if possible – if breast-feeding, use a pump to express milk into a bottle so you don’t have to wake to feed the baby
It’s okay to feed your baby in bed but, for safety, don’t have the baby in bed when sleeping
Keep contact details of people to call for help close by at all times.

Becoming pregnant again after baby arrives

A woman may not realize she could get pregnant again as early as three weeks after having her baby, with breastfeeding and the hormonal changes in the first few months after delivery making contraception more complicated. Of course, every pregnancy needs to be well-planned for a woman with epilepsy.

A new mother will value your help in identifying the best contraception method to use when having sex in the weeks after the birth. This is especially important if the contraception method she had been using is hormonal.

Valproate: what a woman needs to know

If she is taking valproate and wants to get pregnant?

Valproate is an ASM used to treat epilepsy. It can be very effective in controlling seizures, but if a woman with epilepsy gets pregnant while on valproate, her baby is at risk of serious birth defects and developmental disorders. Taking folic acid does not reduce this specific risk, though the risk of developmental disorders is reduced generally by taking folic acid.

While valproate is not suitable for women of childbearing age who could become pregnant, in some instances it may be the only choice where other treatment options have not worked. In these cases, very careful measures must be put in place to prevent pregnancy.

If a woman with epilepsy is on valproate and takes the decision to become pregnant, despite the risks, then she must be made fully aware of, and accept, the high probability of serious developmental abnormalities in her baby.

The risks of taking valproate in pregnancy

For women who take valproate while pregnant:

About 11 babies in every 100 will have a birth defect, compared with about two to three babies in every 100 for women in general. These include:
- Spina bifida – where the bones of the spine do not develop properly
- Face and skull malformations – including cleft lip and cleft palate, when the upper lip or bones in the face are split
- Malformations of the limbs, heart, kidney, urinary tract, sexual organs, and of the eyes – which may affect vision
- Hearing problems or deafness.

At pre-school age, between 30 and 40 children in every 100 will have serious developmental disorders, such as:

Being late in learning to walk and talk
Lower intelligence than other children of the same age
Poor speech and language skills
Memory problems.

Increased risk of autism or autism spectrum disorders, and of attention deficit hyperactivity disorder (ADHD).

In February 2018, the European Medicines Agency (EMA) introduced measures to reduce the risk of exposure of unborn babies to valproate. Most EU countries have put these in place, and the UK also has a safety programme. It is recommended that individuals taking valproate who are considering pregnancy check the EMA recommendations, and check resources from their local or national health authorities. Please also see the Further information section of this website for additional resources.