The Importance of Pregnancy Planning

Patients with epilepsy can have safe, healthy pregnancies and healthy babies. However, proper planning and care is essential.

The goal of planning is to minimize the risk of congenital malformations or adverse neurocognitive outcomes for the fetus while maintaining seizure control for the patient. It is critical that your patients understand the importance of pregnancy planning to achieve this goal and that you ensure patients are on effective contraception in order to minimize the risk of unplanned pregnancy.

Topics covered on this page include:

Helping Patients Make a Pregnancy Plan

When a patient’s care team is aware of the patient’s pregnancy goals, they have time to help the patient create the best possible environment for a developing fetus. Clinicians should stress to patients the importance of meeting with their care team as much as 12 months before attempting to conceive. A clinician should also use their annual patient check up to revisit pregnancy intention to remind patients of the need for advance pregnancy planning. 

Consider different needs for patients who are actively focused on pregnancy planning within a quick time frame versus those who are of childbearing age but not actively looking to get pregnant. 

For example, a 25-year-old patient who says they might want to get pregnant “someday” may only need to add a folic acid supplement and explore contraception options. In contrast, a 35-year-old patient who wants to conceive as soon as possible may need their current anti-seizure medication dosage adjusted or they may need their ASM changed if they are on an ASM with a higher risk.

Collaboration is Key

When helping a patient build a pregnancy plan, work with the other providers on your patient’s care team. Seek and value input from the following:

  • Neurologists/epilepsy specialists
  • Primary care physicians
  • OB-GYNs

The more information you have about your patient’s history and needs, the better equipped you are to help them have safe pregnancies and healthy babies. Consulting with their neurologist/epilepsy specialist is helpful even for patients whose epilepsy is easily controlled. Work together to help your patients take control of their futures.

Confirm Epilepsy Diagnosis and Seizure Control Preconception

Before making a pregnancy plan, confirm the patient’s diagnosis of epilepsy by doing the following:

  • Review or order new standard diagnostic tests.
  • Request a detailed history, including semiology. 
  • Exclude other causes for the patient’s symptoms, such as functional, non-epileptic seizures, which would require other therapeutic approaches and could allow for lowering or discontinuation of ASMs prior to conception.

If a patient’s seizures can’t be controlled after two good ASM trials, they should be referred to an epilepsy specialist. Epilepsy Monitoring Unit (EMU) admission should be considered.

Surgery should be considered for appropriate candidates who do not have seizure control after trying two or more ASMs.

Switching ASMs Preconception

Research shows different ASMs are associated with different levels of teratogenic risk. In the pre-preconception planning phase, if possible, switch patients to ASM(s) with the lowest teratogenic risk for major congenital malformations as well as the least risk of adverse neurodevelopmental outcomes (e.g., for lower IQ or autism). 

Ideally, medication changes/dose adjustments should be made well in advance of pregnancy to establish the efficacy of the ASM regimen at the lowest dose possible for the individual. 

The following are NOT advised:

  • Switching or stopping medications once the patient is already pregnant (always consult the patient’s neurologist). One exception is if the patient is on valproic acid. Switching of this medication should be done at a neurologist’s direction with shared decision making with the patient.
  • Changing medications while a patient is actively trying to conceive. This can put the fetus at risk of exposure to multiple medications. The person should be encouraged to use contraception until the medication change is completed and it is known if the new regimen will provide seizure stability.

Visit our Switching ASMs Before Contraception page for more information about change ASMs prior to pregnancy or the Unplanned Pregnancy page for more information about counseling patients who have unplanned pregnancies. 

Ensuring Seizure Stability

Ensure the patient is prescribed the lowest effective dose of their anti-seizure medication to maintain the best seizure control possible for them. For many ASMs, the risks of fetal exposure may increase at higher doses. 

Note that no one particular dose/level works for all patients. Some patients with epilepsy may maintain seizure freedom at levels lower than the lab-published “therapeutic level.” Others may require higher levels than the lab-published therapeutic levels. Additionally, approximately one-third of people with epilepsy will have drug-resistant epilepsy with ongoing seizures on any ASM regimen. 

It is important to discuss realistic options with the patient and her family about goals of using the safest ASMs possible during a planned pregnancy balanced against seizure stability and trying to minimize the number of tonic-clonic seizures during pregnancy.

Visit our Seizure Control page for more information about ensuring seizure control during pregnancy.  

Ending Contraception

Some contraceptive options may impact the blood levels and efficacy of ASMs, while some ASMs may impact the efficacy of contraception. Visit our Contraception Options page for more information.

Clinicians should work with patients to determine:

  • When to stop using contraception
  • Any adjustments needed to their ASM(s) as a result of stopping contraception*
  • How soon to restart contraceptives after delivery
  • Whether they should go back on the same contraceptive option they were on before delivery

*Note that for lamotrigine, oxcarbazepine, and valproic acid, the patient’s ASM dose can often be lowered after coming off estrogen-containing contraceptive methods. This can be done by obtaining an ASM blood level before stopping the estrogen, followed by dose reduction, and then repeat testing of the ASM level at least one week later with appropriate re-adjustment of the dose. 

Fertility Treatment

There do not appear to be any differences in pregnancy rates, time to conceive, or pregnancy outcomes in people with epilepsy compared to the general population. This means that some of your patients with epilepsy will require fertility treatments to get pregnant. If a patient with epilepsy has been actively trying to get pregnant for six months or longer, offer a referral to a fertility specialist. 

Given how significantly fertility treatment protocols — including those for intrauterine insemination (IUI), and in-vitro fertilization (IVF) — can vary, it is crucial that epilepsy care clinicians stay involved and informed when their patients undergo fertility treatments. 

Before your patient with epilepsy begins fertility treatment, their fertility team should share a detailed protocol with the patient’s neurologist. If the patient is receiving a hormone-based treatment and is on lamotrigine, oxcarbazepine or valproic acid, make sure their ASM levels are checked and, if necessary, change their ASM dosage to maintain her individualized blood target concentration. 

See our Fertility & Epilepsy page for more information.

Folic Acid

Folic acid supplementation is recommended in all people with epilepsy with childbearing potential regardless of immediate plans for pregnancy. It is important that the person begins supplementing with folic acid well before pregnancy and continues it throughout pregnancy, while breastfeeding, and between babies.

All patients with epilepsy and childbearing potential should take at least 400-1000 mcg of folic acid daily (can be prescription, offered in the United States as tablets), with the addition of prenatal vitamins ideally three months before trying to get pregnant (for an additional 800-1000 mcg of folic acid). If the patient isn’t on either folic acid or prenatal vitamins prior to pregnancy, both should be started immediately upon detection of pregnancy.

For more information on supplements, visit our Folic Acid & Supplements page. 

Use of Marijuana, CBD, or Other THC Products 

Clinicians should strongly advise their patients to stop using marijuana, or other CBD or THC products, during pregnancy planning or pregnancy due to their unknown effects on fetal development. Even when from licensed dispensaries, these drugs may contain unknown levels of pesticides and fertilizers.

Guide Your Patients

Reinforce the idea that pregnancy planning and decisions made at this stage, if followed, increase the chances for a safe, successful pregnancy.

Patients will have many questions and concerns about all facets of their decision to become pregnant (e.g., safety during and after for them and their baby, heredity, seizure control, delivery, breastfeeding, ASM exposure, etc.). Take these concerns seriously and address them with facts. 
Conceiving a child is a major life event, so it’s natural for patients and their support system to approach it with some level of trepidation and feel that epilepsy and its perceived complexities will only intensify. Coach your patients through the nervousness with a plan that makes it all obtainable. Assure them your recommendations are being guided by comprehensive research. 

Reviewed by: Page Pennell, MD FAES, August 2023