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    Pregnancy and Epilepsy: Plan With Both Doctors

    |6 min read
    D

    Dovy Paukstys

    Founder, Komori Care

    Abstract photograph for the Pregnancy and Epilepsy: Plan With Both Doctors explainer
    Photo by Lorem Picsum on Unsplash

    By Dovy Paukstys, Founder, Komori Care

    This article is educational and is not medical advice. It does not diagnose, treat, prevent, or cure any condition. Komori is not a medical device, is not FDA-cleared, does not detect seizures, and is not intended for people with epilepsy. Talk with a neurologist or epileptologist about personal medical decisions. Households living with epilepsy should use clinically validated seizure-detection devices as directed by their care team.

    People with epilepsy have healthy pregnancies. That is the lead, because fear usually gets there first.

    NINDS is direct. Epilepsy itself does not block the ability to become pregnant. With planning, an appropriate medicine plan, and folate as the clinicians prescribe it, most people with epilepsy can have a healthy pregnancy and a healthy child.

    "Most" is not "all." Some antiseizure medicines carry a higher risk of birth defects. Which ones, at what dose, for which syndrome: that is a clinician topic. I am not posting a drug list. I am not posting doses. If a page on the internet ranks medicines for you, close it.

    I am not a clinician. I do not have epilepsy. I am not walking anyone through a taper.

    Two doctors, not one

    The useful team is a neurologist or epileptologist plus an obstetrician. High-risk OB or maternal-fetal medicine if the OB wants that consult. NINDS says to work with a team that includes both.

    The American Academy of Neurology, the American Epilepsy Society, and the Society for Maternal-Fetal Medicine published an updated practice guideline in 2024 on teratogenesis, perinatal, and neurodevelopmental outcomes after in-utero exposure to antiseizure medicine. The AES press release on that guideline is the public version I opened. The clinical paper lives in Neurology.

    The public message from the guideline authors is not subtle. Talk before you try to conceive. If you find out you are pregnant, tell the doctors immediately. Do not stop or change medicines on your own.

    Stopping a medicine that is controlling convulsive seizures can hurt the pregnant person and the fetus. The guideline tells clinicians they must minimize convulsive seizures during pregnancy. It also tells them to be careful about ripping out a working medicine after conception, even when that medicine is not the theoretical first choice.

    Those are clinician judgments. The blog version is: do not freelance.

    Plan early if you can

    The Epilepsy Foundation's preparing-for-pregnancy page suggests starting the conversation as much as 12 months before trying. That window is for seizure control, medicine changes if the team thinks a change is needed, and folate as prescribed. Some people want to conceive next month. Some are thinking three years out. The plan follows the person.

    A lot of pregnancies are not planned. The AAN/AES/SMFM guideline notes that the medicine a person is already on is often the medicine they conceive on. That is why the guideline tells clinicians to think about fetal risk at the first prescription after menarche, not at the positive test.

    If you are already pregnant, you still call both doctors. Today. Not after you "research it."

    What I will not do on this page

    I will not name a preferred medicine.

    I will not name a medicine to avoid.

    I will not quote a milligram of folic acid.

    The 2024 guideline discusses all of that. Your neurologist has the paper. Your OB has the paper. The choice depends on the epilepsy syndrome, how likely a given medicine is to control your seizures, and other conditions you have. A ranked list copied onto a wellness site is how people get the wrong drug for their syndrome.

    Teratogenicity is a clinician topic. Full stop.

    The registry that actually collects this

    If you are pregnant and taking an antiseizure medicine, there is a real place that wants the data.

    The North American AED (Antiepileptic Drug) Pregnancy Registry sits at Massachusetts General Hospital and is a philanthropic arm of Harvard Medical School. It enrolls people in the U.S. and Canada. It started in 1997. The provider page I opened says more than 15,500 women have enrolled.

    You enroll. A doctor cannot enroll you. Toll-free: 1.888.233.2334. Site: https://www.aedpregnancyregistry.org/.

    NINDS points people to the same registry. Participants get educational material on pre-conception planning and perinatal care, and they share confidential information about the child's health. That is how the field learns which medicines are riskier, without a blog inventing a league table.

    If you are outside North America, ask the care team which registry covers your country. I am not guessing at those URLs.

    Heredity, briefly

    NINDS puts the recurrence numbers in public language. Children of parents with epilepsy have about a 5 percent risk of developing epilepsy at some point, versus roughly 1 percent in the general population. The risk is higher if the parent has a hereditary form. A genetics clinician owns that conversation if you want it.

    Epilepsy is not contagious. You cannot give it to a partner or a newborn by contact.

    After the baby

    Sleep collapses. Sleep loss is a seizure trigger. See sleep and epilepsy. That is a postpartum planning problem as much as a pregnancy one. Ask the neurologist before the due date what the plan is if nights get ugly.

    CDC first aid still applies. A seizure in a pregnant person is one of the CDC reasons to call 911.

    Consumer devices do not manage this. Komori is not intended for people with epilepsy and is not cleared for pregnancy use. Clinically validated seizure-detection devices, if they are in the plan, come from the care team.

    Related reading

    FAQ

    Can I have a healthy pregnancy if I have epilepsy?

    NINDS says that with planning, appropriate medicine selection, and folate as directed, most people with epilepsy can. AES's summary of the 2024 guideline starts from the same place: most children born to people with epilepsy are healthy. Individual risk is a clinic visit.

    Should I stop my seizure medicine when I find out I am pregnant?

    No. The AES/AAN authors say do not stop or change medicines without talking to your doctor. Uncontrolled convulsive seizures have their own risks.

    Who should be on the care team?

    At least a neurologist or epileptologist and an obstetrician. NINDS names that pairing. Maternal-fetal medicine joins when the OB wants it.

    What is the North American AED Pregnancy Registry?

    A research registry at Massachusetts General Hospital / Harvard Medical School that collects outcomes after antiseizure-medicine exposure in pregnancy. You call 1.888.233.2334 or go to https://www.aedpregnancyregistry.org/ . Providers cannot enroll you. You have to call.

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