Being a trans parent

    Fast facts

    1. 1
      If you want to be a parent, your epilepsy should not stop you
    2. 2
      Some contraception is less effective with some epilepsy medicines
    3. 3
      Some epilepsy medicines are more safe during pregnancy than others. Some epilepsy medicines can cause birth defects
    4. 4
      Some people with epilepsy have a slightly higher risk of reduced fertility than people who don’t have epilepsy
    5. 5
      If you want to get pregnant it’s a really good idea to plan this in advance. Your epilepsy doctor may think it’s a good idea for you to change medicines. This would have to happen slowly

    If it’s your partner who is pregnant or planning to be pregnant see below for practical parenting tips.

    Important!

    Valproate medicines can seriously harm an unborn baby

    Valproate medicines include sodium valproate (Epilim, Episenta, Epival, Depakote) and valproic acid (Convulex).

    In the UK, the Medicines and Healthcare products Regulatory Agency (MHRA) has issued rules about prescribing valproate medicines. These rules say doctors must not prescribe valproate to women or girls of childbearing potential, unless it is the only medicine that will work.

    Valproate medicines

    If you were born female and it’s biologically possible to get pregnant, the rules for prescribing valproate medicines will apply to you.

    If you take valproate medicine, your doctor will ask you to enrol on a pregnancy prevention programme (PPP). This could be even if you’re not having sex with a man. The programme requires you signing a form to:

    The Epilepsy Action website has more information about valproate medicines

    Some other medicines also have a risk of birth defects but research shows the risk is lower than valproate medicines. There’s more information on the Epilepsy Action website about epilepsy medicines in pregnancy 

    1

    Because some epilepsy medicines can cause birth problems, it is always best to avoid unplanned pregnancy if at all possible

    2

    If you’re planning a pregnancy, make an appointment with your epilepsy nurse or doctor for pre-conception counselling

    3

    Talk to your epilepsy doctor about the best way to limit your seizures during pregnancy

    4

    Talk to your healthcare team about a birth plan that will reduce the risks to you and your baby during delivery

    5

    It's recommended to take folic acid before and during pregnancy. People taking epilepsy medicines should take a higher dose

    If you get pregnant, whether you’ve planned it or not, don’t stop taking your epilepsy medicine unless your doctor tells you to. Stopping epilepsy medicine suddenly could make you have more frequent or more severe seizures, and could even put your life at risk.

    Watch

    Epilepsy and pregnancy, by The Walton Centre NHS Foundation Trust

    Practical parenting tips

    Do something

    Write down any thoughts or concerns you have about how your epilepsy might affect becoming a parent. You could discuss them with your epilepsy nurse or doctor at your next appointment.

    More info

    More info on the Epilepsy Action website about contraception

    Contraception

    More info on the Epilepsy Action website about periods and fertility

    Periods and fertility

    More info on the Epilepsy Action website about epilepsy medicines in pregnancy

    Medicine in pregnancy

    More info on the Epilepsy Action website about planning a pregnancy

    Planning a pregnancy

    More tips for caring for children on the Epilepsy Action website

    Caring for children

    More info about valproate medicines on the Epilepsy Action website

    Valproate medicines

    Stories for parents to explain epilepsy to their children on the Epilepsy Action website

    Stories for children
    Updated 12 May 2020
    Review 12 May 2023
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