NSE : Information on epilepsy : Pregnancy and childcare

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Information on epilepsy: Pregnancy and parenting

A guide to starting a family

If you have epilepsy it doesn’t automatically mean that having a family will be any more difficult for you than for anyone else. But it might mean that as a parent-to-be you have more things to consider before, during and after the pregnancy. These pages look at the
issues around pregnancy and parenting that sometimes affect people with epilepsy. It aims to help you look at how these issues might relate to your epilepsy.

I have epilepsy - can I have children?

Having epilepsy doesn’t usually make it harder to have a family – but it might mean that you have more things to consider when starting to try for a family.

Some people with epilepsy feel that their sexual response or sex drive is low which may make it difficult for a couple to “get pregnant”. This can happen for a number of different reasons; anxiety, depression,
and the side effects of some anti-epileptic drugs (AEDs) may all contribute. If you are concerned about your sex drive or sexual response you can ask your doctor for advice.

Certain AEDs may reduce the production of sperm for some men, which could reduce a man’s fertility. Some women with epilepsy have irregular periods or a condition called Polycystic Ovary Syndrome. These can be side effects of some AEDs. Both these side
effects are treatable but can make becoming
pregnant more difficult.

More information on polycystic ovary syndrome is on the women and epilepsy page

Could my child inherit my epilepsy?

Although you may be concerned that AEDs might affect your chances of becoming pregnant it is important never to stop taking AEDs suddenly and without the medical guidance of your neurologist or GP.

Sometimes epilepsy happens as part of an inherited medical condition, passed from parent to child. This is rare, but includes the conditions neurofibromatosis and tuberous sclerosis.

Genetics play a part in the development of epilepsy in everyone, but how important this is varies. As every situation is different, it can be helpful to talk about this with a doctor who specialises in genetics (geneticist).
Information on different types of seizures

Can being pregnant affect my AEDs?

During pregnancy your body uses up more of your AEDs than usual. This means the amount of AEDs you normally take may not be enough to stop your seizures from happening.

Your neurologist might ask you to have a blood test to make sure that the amount of AEDs you take is at the right level for you and your baby. Testing the levels of the AED in your blood helps your neurologist decide
if the dose needs to be changed. Testing blood levels works for some AEDs but not all. With all AEDs, the frequency of seizures will be watched to see if the dose of the drug needs to be increased. If it does need to be increased, the dose will usually be slowly
reduced to its original level after the birth.

Can morning sickness affect my AEDs?

Despite the name, morning sickness can happen at any time of the day and affects some women when they’re pregnant. If you’re sick after taking your AEDs, the medication may not have a chance to work
properly. You might consider changing the time you take your AEDs, for example taking them when you’ve stopped feeling sick. Your doctor should be able to advise you on how best to cope with morning sickness and how to manage your AEDs.

Can AEDs affect an unborn baby?

If the baby’s father has epilepsy, his epilepsy and any AEDs he takes will not affect the baby’s development, because the baby will not come into contact with his AEDs.

For a woman with epilepsy who takes AEDs during her pregnancy, her baby will be exposed to the AEDs in the womb. Although while she is pregnant a mother’s bloodstream is kept separate from her unborn baby’s, some substances can pass from her
blood into her baby’s blood via the placenta. These substances include nutrients, oxygen, antibiotics, alcohol and medication, including AEDs. Some AEDs can affect how the baby grows and develops in the womb, particularly so in the first 15 weeks of pregnancy when the baby’s main organs and skeleton are developing.

Pregnancy and birth defects

For any pregnant woman there is a small risk (a ‘background’ risk) that her baby may be born with a birth defect. Birth defects, or developmental abnormalities as they are sometimes called, are physical problems that happen when the development of a baby is affected while it is in the womb.

There are different types of birth defects, which can affect different organs in the body, and happen for different reasons. Sometimes birth defects are classed as minor and major. Minor malformations are those that do not require surgery, and major malformations are those that do need surgery to correct them.

Major birth defects include cleft lip, cleft palate and problems with the development of the spine and nervous system (called neural tube defects). Other defects include problems with how the internal organs (such as the heart and lungs) develop. Sometimes
the child’s arms, legs, or the way their face looks, may also be affected.

If you are pregnant, avoiding alcohol, smoking and other drugs will help minimise the risk of birth defects.

AEDs and birth defects

If For a woman with epilepsy taking AEDs during her pregnancy, the risk of a birth defect to her baby is slightly increased above the background risk. How much the risk increases depends on which AEDs are being taken and at what dose.

Women who don’t take AEDs during
pregnancy have a 3% (3 in 100) risk that
their baby will have a major birth defect.
Taking one AED increases this risk to
around 3 - 7% (3 in 100 to 7 in 100).
If two or more AEDs are taken, the risk
increases to around 10% (1 in 10).

For example, looking at neural tube defects
(a group of major defects, which include
spina bifida):

In the general population the risk of a
baby being born with a neural tube
defect is around 0.2 - 0.5% (1 in 500 to
1 in 200).
If a woman is taking sodium valproate
(Epilim) during her pregnancy this risk is
around 1 - 2% (1 in 100 to 1 in 50).
If a woman is taking carbamazepine
(Tegretol) it is 0.5% (1 in 200).

Different AEDs vary in the risk they pose; and the risk is often greater the higher the dose of the drug. At the moment sodium valproate (Epilim) appears to have greater risks than other AEDs. An ongoing study into the effects and risks of AEDs on an unborn baby’s
development aims to help understand those risks and to find out whether any specific drugs should be avoided during pregnancy.

However it is worth remembering that about 95% (95 in 100) of pregnant women with epilepsy have a perfectly normal pregnancy and a healthy baby with no malformations.

Foetal anti-convulsant syndrome
Some AEDs are thought to affect a child’s development after they are born, this is called foetal anti-convulsant syndrome (FACS). The risk of this happening appears to be higher with sodium valproate. FACS can affect a child as they grow by causing
developmental or learning difficulties, and problems with behaviour. Often these effects are not seen until the child starts to get older.

Preconception counselling

Because of the possible effects of AEDs on an unborn baby, having your AEDs reviewed before you get pregnant can help you and your neurologist to make sure that you are taking the most appropriate AED and at the most suitable dose during your pregnancy.

Preconception counselling is an opportunity for you and your doctor to consider any changes to your epilepsy treatment that might be helpful before you
become pregnant. It helps you to be fully informed about the effects pregnancy may have on your epilepsy, as well as the effect your epilepsy and AEDs may have on your pregnancy and unborn baby.

If you have seizures you are likely to be advised to keep taking your AEDs throughout your pregnancy. However your doctor may suggest taking the lowest possible dose that will still control your seizures. Or they might suggest a change to the AEDs that you take.

Some women prefer not to take AEDs during their pregnancy and may want to discuss this option with their neurologist. If you have seizures during pregnancy there is a risk of injury to yourself and your baby. This risk could be higher (depending on the type
and frequency of seizures you have) than the risk of the AED affecting your baby.

If you have been seizure-free for two or three years, your doctor might suggest slowly stopping your AEDs before starting your family. However there is a risk if your AEDs are stopped that your seizures could start
again. Having seizures again could affect your lifestyle - for example your home or work life - and if you are currently driving you would need to hand your driving licence in until you were seizure-free for one year.

Making decisions about your medication is not always easy and preconception counselling should give you the chance to ask any specific questions or talk about any concerns you may have.

What if I'm already pregnant?
If you become pregnant without having the chance to speak to your neurologist first it is recommended that you keep taking your AEDs and start taking folic acid. It is also recommended that you make an appointment to see your neurologist as soon as possible.

Why is taking folic acid recommended?

Folic acid is a vitamin that helps a developing
baby’s spine to form. The Department of Health recommends that all women take folic acid throughout their pregnancy and ideally before becoming pregnant. Women who increase their intake of folic acid at the
time their baby’s spine is forming (in the first three months of pregnancy) reduce the risk of having a baby with neural tube defects. It is strongly recommended that women with epilepsy take 5mg of folic acid daily before they become pregnant. Folic acid is available
free of charge on prescription.

What is pre-natal screening?

Pre-natal screening is the name for a number of different checks that are done during pregnancy to see how the baby is developing in the womb. This includes ultrasound scans which are done at certain intervals
throughout the pregnancy. As part of the pre-natal screening checks, some women have their alpha-fetoprotein (AFP) levels checked in a blood test at around 15-16 weeks into their pregnancy. 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 health disorders including spina bifida. Screening does not say for certain if a baby will be born with or without any birth defects or developmental abnormalities. It just uses the information collected to determine the risk of an unborn baby being born with birth defects or developmental abnormalities.

Why is vitamin K prescribed?

Vitamin K plays an important part in making our blood thicken (clot). A very small number of newborn babies (about 0.01% or 1 in 10,000) are born without enough vitamin K. This can cause nose bleeds, mouth bleeds
and in some cases internal bleeding. The risk of having low vitamin K is slightly higher for babies whose mothers have taken certain AEDs during their pregnancy.

The Department of Health recommends that all newborn babies are given extra vitamin K at birth or within the first month of being born. Depending which AEDs you take you may also be prescribed a daily 10mg dose of vitamin K during the last month of your pregnancy, as well as your baby being given vitamin K at birth (usually by injection).

Will having epilepsy affect my labour?

Most women with epilepsy have normal deliveries and healthy children. It is useful for the midwife and medical team who will be at the birth to know about your epilepsy, including what type of seizures you have, which AEDs you take (if any) and when you normally take them. Ideally, AEDs are taken as normal during labour.

If you want to have a home birth you will need to carefully consider the possible effects of having a seizure during labour, which could lead to complications. Women who would like to have a water birth may also need to consider the effect of seizures if they become confused or lose awareness during their seizures. Generally, caesarean sections are
only necessary if this is in the best interests of the mother and her baby.

About 1 - 2% (1 in 100 to 1 in 50) of women with epilepsy have a tonic clonic seizure during labour - even if they don’t normally have tonic clonic seizures. If a seizure happens during labour, drugs can usually be given to control it. A further 1 - 2% (1 in 100 to 1 in 50) will have a tonic clonic seizure up to 24 hours after the birth.

What pain relief can I have?

Women with epilepsy can have most types of
pain relief during labour. These include:

an epidural (an anaesthetic into the
spine);
breathing techniques;
gas and air; and
a TENS machine (which uses
electrical impulses to stop pain
signals getting to the brain).

Pethidine, a strong painkiller, has been
thought to trigger seizures in some women
and therefore caution is advised.

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

The UK Epilepsy and Pregnancy Register (UKEPR)

If you have epilepsy and are thinking of becoming pregnant, or you are already pregnant, you might like to contact the UKEPR. The UKEPR is a long-term study looking at the effect of AEDs on unborn babies and the effect of having seizures while pregnant. The study lets you speak to an epilepsy nurse and ask questions about your pregnancy and epilepsy.

If you would like to join the UKEPR you will be asked
about your epilepsy and your AEDs (if you take them). Being a part of the study is free of charge. The UKEPR may want to contact you after your baby is born. It is hoped that the findings from the study will provide some answers and guidance for other women in the future.

More details about the UKEPR (opens in new window) Alternatively call: 0800 389 1248 from UK
or: 1 800 320 820 from ROI

Childcare

If you or your partner’s seizures are controlled then epilepsy may not affect how you look after your child. However, parents who still have seizures may find taking extra safety measures helpful. This depends on the type of seizures the person has and the activity involved.

Can I breast-feed my baby?
The Department of Health recommends that every woman should be encouraged to breastfeed her baby. Breast milk provides all the nutrients a baby needs, for the first six months of their life.

Breastfeeding is recommended even if you take AEDs. Your baby will have become used to the drugs while in your womb, and only a small amount of AEDs
is in breast milk. Some drugs (for example phenobarbital) can make a baby over sleepy, so it may be a good idea to alternate between formula and breastfeeds. Patient information leaflets, which come with each new prescription of an AED, often include
information about breastfeeding for that particular drug. If you have any doubts, talking this through with your neurologist, midwife, or health visitor may help.

If you’re more likely to have seizures when you’re over tired, you may want to consider if breastfeeding your baby during the night is a good option for you. If possible, sharing night time feeds with a partner might
be one way to increase the chance of a good night’s sleep.

Ideas for keeping you and your baby safe
If your seizures happen suddenly and without
warning the following ideas may be helpful to keep your baby safe. These might not always be necessary, especially if there’s someone else around to help you, but they could be helpful if you’re home on your own.

Dressing and changing your baby on the floor means they only have a short fall if you have a seizure.
Sponging your baby down on a changing mat on the floor is safer than bathing the baby in water.
When carrying your baby it may be safer to use a carrycot or sling than to carry them in your arms. A padded carrycot will help protect your baby if you have a seizure.
Putting a deadlock on your baby’s pram means the pram will stay in place if you let go of it during a seizure.
When feeding your baby, a lower highchair is less likely to tip over than a taller one.
Feeding your baby while you sit on the floor, surrounded by cushions and leaning against the wall may help to make your baby safer if you suddenly have a seizure.

Talking about epilepsy to your child
Children can often be taught at quite a young age what to do if someone has a seizure. Some children learn what to do from watching other people. During a seizure your child could:

stay with you so they don't get lost
get help from someone else, for example a neighbour or friend
help you themselves if they know what to do.

Information on first aid for seizures.

Some people wear medical jewellery or carry an ID card saying that they have epilepsy and what to do if a seizure happens. Even if children are too young to manage seizures, they may be able to let other people know about the card or jewellery.

Information about the medical and ID bracelets.

Free identity cards are available from the NSE online shop

What about immunisation?

There has been some concern that the MMR
(measles, mumps and rubella) vaccine may be linked to causing seizures. However, current research suggests that there is no connection between the vaccine and epilepsy.

If you are concerned about any vaccination your child may need, you can talk about this with your child’s doctor or paediatrician. It is your choice whether
your child is vaccinated, and having more information might help you make that choice.The following guidelines are taken from the Department of Health publication ‘Immunisation against Infectious Disease’.
They state that:

“No child should be denied immunisation without serious thought as to the consequences, both for the individual child and for the community. Where there
is doubt, advice should be sought from a Consultant Paediatrician, District (Health Board) Immunisation Co-ordinator, or Consultant in Communicable Disease
Control”.
Immunisation Against Infectious Disease 2006 - "The Green Book" (opens new window)