Starting a family

Different ASMs vary in the risk they pose, and the risk of abnormalities rises with higher doses of the drug and if you already have a child with a birth abnormality.

Taking more than one ASM increases the risks, especially if this includes sodium valproate or topiramate.

• 2 – 3 women in every 100 (2 – 3%) in the general population will have a baby with a major malformation (the ‘background risk’). 
• 3 women in every 100 (3%) who have epilepsy and don’t take ASM will have a baby with a major malformation. 
• 4 – 10 women in every 100 (4 – 10%) who have epilepsy and who take an ASM will have a baby with a major malformation.
• In 2021 the Commission on Human Medicines (CHM) reviewed safety data for epilepsy medications taken during pregnancy. This showed that lamotrigine (Lamictal), and levetiracetam (Keppra) are safer to use during pregnancy than other ASMs. They have low rates of physical birth abnormalities, in line with the background risk (2 – 3%).

The Medicines and Healthcare products Regulatory Agency (MHRA) has produced more guidance on the risks for ASMs in pregnancy. 

A further study into pregabalin was published in April 2022, which showed a slightly higher risk of birth abnormalities with pregabalin, although the overall risk is low.

Some ASMs are thought to affect a child’s development after they are born – this is called Fetal anti-convulsant syndrome (FACS). The risk of this happening is higher with sodium valproate than with other ASMs.

Problems with the child’s development and learning can include: delayed walking and talking, poor speech and language, and problems with memory, attention, lower intelligence, and behaviour. Often these effects are not seen until the child gets older, for example when they start nursery or school.

Children exposed to sodium valproate in the womb may also be more likely to be on the autism spectrum.

The following organisations provide information and support to families affected by FACS.
infactuk.com and oacscharity.org

Sodium valproate (brand names include Epilim, Depakote, Convulex, Episenta, Epival, Kentlim, Orlept, Sodium Valproate, Syonell, Valpal, Belvo and Dyzantil) has greater risks in pregnancy than other ASMs, with 7 women in 100 (7%) having a baby with a major abnormality, rising to 1 in 10 women (10%) if they take more than 1000mg (1g) per day.

Also, up to 4 children in 10 (up to 40%) whose mothers took sodium valproate have problems with development and learning. In addition, the MHRA have also issued information about an increased risk of lower birth weight for babies exposed to sodium valproate.

There is also evolving information about potential risks in men.

The (MHRA) states that sodium valproate should not be prescribed to anyone under the age of 55, unless it is the only effective drug for them. Women should be on a pregnancy prevention programme (PPP - see below). They also recommend that treatment with sodium valproate should only be started by a doctor experienced in managing epilepsy.

Sodium valproate is an effective drug for epilepsy and, for some people, it is the best or only drug that controls their seizures.

Whichever ASM you are taking, do not suddenly stop taking it, but talk to your doctor or ESN about any specific risks, and the best options, for you individually.

New safety measures were introduced in June 2024 for the epilepsy medication, topiramate, also known by the brand name Topamax.

The safety measures follow a major safety review triggered by a European study which showed that children born to mothers who take topiramate during pregnancy face a two to three times higher risk of intellectual disabilities, autism spectrum disorders, and attention deficit hyperactivity disorder.

The  Medicines and Healthcare products Regulatory Agency (MHRA) is advising that topiramate should no longer be prescribed for epilepsy during pregnancy unless there is no suitable alternative treatment. 

If you are a woman or girl of childbearing age taking topiramate medication, you will need to be on a pregnancy prevention programme (PPP) - see below.

If you are pregnant, or planning to become pregnant, and you currently take topiramate for epilepsy, you should not stop taking the medication but should seek the advice of a specialist. Stopping medication without supervision may cause your seizures to start again, happen more often, or last longer. 

Anyone planning to start a family should make an appointment with their GP to discuss their treatment options.

If you suspect you have had a bad drug reaction with topiramate, you can report this through the Yellow Card scheme.

Current MHRA advice states that sodium valproate must not be prescribed for any woman or girl under the age of 55, unless she has a pregnancy prevention programme (PPP sometimes called PREVENT) in place. Topiramate should not be prescribed to any woman or girl of child bearing age unless they have a PPP:

• Your specialist will discuss the risks of taking sodium valproate or topiramate with you, and whether or not you are planning to become pregnant. This will help to decide if the PPP is right for you. 
• They will explain the risks to an unborn child if you take sodium valproate or topiramate during pregnancy (see above). 
• Before you start to take sodium valproate or topiramate, you will need to have pregnancy tests. 
• Your specialist will explain the options for highly effective contraception.
• Your specialist will carry out reviews of your treatment at least annually. You and your specialist will complete an annual risk acknowledgement form at each review. This confirms that you have been given appropriate advice, which you have understood.

You should also be given safety and education materials to help explain and support the implementation of these measures.

Your pharmacist will also give you a patient card with information about sodium valproate or topiramate.
For more information visit
gov.uk/government/news/update-on-mhra-review-into-safe-use-of-valproate
gov.uk/drug-safety-update/topiramate-topamax-introduction-of-new-safety-measures-including-a-pregnancy-prevention-programme

Most women with epilepsy have over a 90% chance of having a healthy baby. Any individual risks for you will depend on many factors, including your type of epilepsy, the ASM and dose you take, and any other medical conditions.

If you stop taking your ASM, your seizures may increase, or become more severe. Seizures may cause more harm for you and your baby than any risks associated with the ASMs themselves. You and your specialist can discuss any specific risks, and the best options, for you individually.

Pre-natal screening is the name for a number of different checks that all women have during pregnancy, to see how their baby is developing in the womb. They include ultrasound scans which are done at certain intervals throughout pregnancy, commonly at 12 weeks (known as the ‘dating scan’) and at 18 – 20 weeks (known as the ‘anomaly scan’). 

Women are also offered blood tests that measure a number of things including alpha fetoprotein (AFP) levels. AFP is a type of protein which is passed from an unborn baby to its mother. The levels of AFP in a mother’s blood can indicate the risk of their baby being born with certain disorders including spina bifida. 

Screening does not show for certain if a baby will be born with or without birth abnormalities. However, it can help to determine the risk of a baby being born with birth abnormalities.

Folic acid (vitamin B9) helps a developing baby’s spine to form, and reduces the risk of neural tube defects, for example spina bifida. 

The Department of Health (DoH) recommends that all women planning to have a baby take 0.4 μg (400 micrograms) of folic acid daily, and throughout the first 12 weeks of pregnancy.

It is strongly recommended that women with epilepsy on ASM take a higher dose of 5000 micrograms (5 milligrams) of folic acid daily, as soon as they start trying for a baby and for at least the first 16 weeks of their pregnancy, or for the whole pregnancy if their doctor feels this is appropriate. This strength of folic acid is only available on prescription but will be free of charge.

During pregnancy your body may use up more of your ASM than usual. This means that the amount of ASM you normally take may not be enough to stop your seizures from happening. This is especially true for the ASM lamotrigine (Lamictal) and phenytoin.

Routine monitoring of ASM levels in pregnancy is not generally necessary. However, your neurologist might ask you to have blood tests to make sure that the amount of ASM you take is at the right level for you and your baby throughout your pregnancy, especially if your seizures increase or are likely to increase.

Testing the levels of the ASM in your blood helps your neurologist decide if the dose needs to be changed. If your dose does need to be changed, it will usually be slowly reduced back to its original level after you give birth.

However, if the higher dose has led to better seizure control after the birth, and there is no evidence that this dose is causing you problems, then you and your neurologist may decide to leave your ASM at this new dose.

Despite the name, morning sickness can happen at any time of the day and affects some women during the first 12 weeks of pregnancy, although it can last longer.

If you are sick after taking your ASM, the medication may not have a chance to work properly. Changing the time of day you take your ASM, for example taking them when you’ve stopped feeling sick, may be helpful. However, it is important (as far as possible) to keep the length of time between doses the same.

Your doctor should be able to advise you on how best to manage your ASM.

Tonic clonic seizures could potentially cause miscarriage or serious harm to you and your baby. In rare cases, women with epilepsy have died during pregnancy, mostly due to poor seizure control. 

Other seizures are probably less harmful, but may be associated with premature birth and lower birth weight.

However, if you injure yourself during any type of seizure, this can carry risks. To reduce any risks to you and your baby, the aim is for you to be as seizure-free as possible during your pregnancy. Taking your ASM as prescribed, and telling your doctors or midwife about any seizures you have, can be helpful.

If you become pregnant without having the chance to have preconception counselling, it is recommended that you:

• keep taking your ASM as normal; 
• ask your doctor to prescribe daily folic acid supplements of 5 milligrams (see above); and 
• make an appointment to see your neurologist as soon as possible.

If you have epilepsy and want to try for a baby, or you are already pregnant, you might like to contact the register.

This is a long-term study looking into the outcomes of children born to women with epilepsy, including the possible effects of ASMs on unborn babies.

If you join the register, you will be asked about your epilepsy and any ASMs that you take, and the register research team will contact you after your baby is born at set time points to find out how you and your baby are doing.

Participating in the register includes follow up of your baby’s development and it is hoped that the findings from the study will provide some answers and guidance for other women in the future. It is free of charge to be part of the study.

Women with epilepsy can use most types of pain relief during labour. These include:
•   an epidural (an anaesthetic into the spine); 
•   breathing techniques; and 
•   gas and air (called Entonox).

Another way to relieve pain is to use a TENS (transcutaneous electrical nerve stimulation) machine, which uses electrical impulses to stop pain signals getting to the brain.

The NHS recommend that TENS machines are not used by people with epilepsy, and many manufacturers  include a warning in their instructions and advise women with epilepsy to speak to their doctor before using a TENS machine.

Pethidine, a strong painkiller, has been thought to trigger seizures in some women with epilepsy and, if possible, should be avoided.

It is helpful to tell the midwife and the medical team if your seizures have particular triggers. For example, if over-breathing, tiredness, or pain have triggered seizures in the past.

Vitamin K plays an important part in making our blood thicken (clot). A very small number of newborn babies are born without enough vitamin K. This can cause nose bleeds, mouth bleeds, and in some cases internal bleeding. Some ASMs can reduce a mother’s vitamin K levels, and this can increase the risk of their baby having low vitamin K levels. The Department of Health (DoH) recommends that all newborn babies are given extra vitamin K at birth, or within the first month of being born.

The DoH recommends that every woman is encouraged to breastfeed her baby if at all possible. Breastmilk usually provides all the nutrients a baby needs for the first six months of their life.

If you take ASMs, your baby will have become used to the drugs while in your womb. If you breastfeed, then a small amount will be passed to your baby in your breastmilk. Breastfeeding can be a useful way of weaning your baby off the medication that they have become used to. 

However, you may want to check the patient information leaflet that comes with your ASM, which often includes information about breastfeeding and that particular drug. You can also talk to your neurologist, ESN, midwife, or health visitor about any concerns.

Some drugs, such as phenobarbital and primidone, can pass more easily into breastmilk and can make a baby sleepy, so it may be a good idea to alternate between formula milk and breastfeeds. The Breastfeeding Network has a helpline run by volunteers.

Most parents with epilepsy do not have children with epilepsy, and the chances of inheriting the condition are generally low.

The risk for any child to develop epilepsy by the age of 20 is around 1 in 100 (1%), and the risk may increase to around 2 to 10 in 100 (2 – 10%) for most children whose parents have epilepsy. There is a slighter higher risk of developing the condition if the mother has epilepsy than if the father has the condition.

However, the chances of your child inheriting epilepsy may depend on various factors, including: whether your epilepsy has a genetic cause, what type of epilepsy you have, at what age it started, and whether your partner or another child of yours has epilepsy. 

Your neurologist may be able to give you more information about your epilepsy.

Epilepsy can be a symptom of an inherited medical condition, that is passed from parent to child. These include the rare conditions tuberous sclerosis and neurofibromatosis.

Genetic testing can help identify if a person’s epilepsy has a genetic cause or if they are likely to pass it on to their children.

Another genetic factor is our ‘seizure threshold’, which is the brain’s natural resistance to seizures and part of our genetic make-up. As we all have a seizure threshold, any of us could have a seizure under certain circumstances.

If a child inherits a low seizure threshold they are more likely to start having seizures. If they inherit a high seizure threshold then seizures are less likely to start unless an outside factor happens, for example a severe head injury.