Frequently Asked Questions

If you decide to take part we will ask some initial questions about your epilepsy and your background, both before and during pregnancy. Once your baby has been born we will send a letter to your GP to ask about your child’s health at birth as well as some questions about you. When your child is 3, 6 12 and 24 months old we will send you some questions about feeding, health, and how they are developing. You can choose to answer the questions online or if you prefer, we can complete them with you over the phone or via the post. You can find out more HERE

To register with The UK Epilepsy and Pregnancy Register you must be currently pregnant. If however you would like some information or advice about planning for a family or epilepsy and pregnancy you can contact us via the Freephone number - 0800 389 1248 and we will do our best to answer your questions in confidence.

Yes. If you have had a diagnosis of epilepsy and are currently not taking medication, you can register as we are also interested in the group of women who are not on medication.

The UK Epilepsy and Pregnancy Register is a prospective register which means to register you must be currently pregnant. Unfortunately, if you have already delivered your baby you cannot be included in our study.

Most women are worried about taking a seizure in labour or during delivery. The good news is that only around 2% (that's 2 women in every 100) of women with epilepsy will have a seizure during labour or delivery. It is important to remember to take your medication during labour. Ensure the midwife looking after you in labour knows you have epilepsy. It is also recommended that you deliver in a hospital so that if a problem arises there will be qualified staff there to deal with it.

TENS machines are often used for pain relief during labour and are suitable for women with epilepsy. Epidurals and gas and air are also suitable. Pethidine (although not routinely used now in obstetric care) may bring on seizures in some people with epilepsy and may be best avoided if possible.

It is useful when you pack your bag in preparation for going into hospital you also pack some of your medication. This means if you go into labour during the night or have to rush to hospital unexpectedly you will have some medication with you, as many maternity hospitals will not keep your particular medication and the hospital pharmacy might not be open. It may be useful to remind doctors and midwives that you have epilepsy. It may also be useful to ask your birth partner or midwife to remind you to take your medication at the usual times during labour.

Following delivery of your baby you may be at increased risk of seizures for a few months. This is to do with the changes in your body such as fluctuating hormone levels and also the sleep disturbance and tiredness every new mother experiences with a young baby. You will feel better prepared and more confident if you have thought about and discussed safety issues in regards to your baby in the antenatal period. Such issues may include; feeding the baby whilst sitting on the floor supported by cushions if you have sudden or unpredictable seizures, changing the baby at floor level on a changing mat, and not bathing the baby on your own. It is important to remember that this does not mean you do not care or look after your baby; you are simply thinking of and putting into place simple safety precautions to help protect and keep your baby safe. More information can be found HERE.

Breastfeeding is safe and is generally recommended (except in very rare cases) and you should discuss this with your specialist, doctor/midwife or lactation consultant. Your medication will pass into your breast milk in a diluted form. It can be a useful way to wean the baby off your medication as he/she will have been exposed to the drug throughout pregnancy. We would advise you to watch for drowsiness or for failure of your infant to thrive.

This is a difficult question as the information will vary from woman to woman. To reduce any possible risks it is recommended that you seek advice and counselling before you conceive with regards to your epilepsy and epilepsy medication. This is called pre conceptual counselling. This counselling, preferably from an epilepsy specialist, gives you an opportunity to make any changes to your medication prior to conceiving. There are a number of medicines which we are still learning about. Click HERE to help.

It is important that you never abruptly stop or make any changes to your medication without the advice and supervision of your specialist or GP. The danger from uncontrolled seizures to both mother and baby is a serious one in pregnancy. For most women with epilepsy staying on medication poses less risk to their own health and the health of their babies than discontinuing the medication. The majority of women with epilepsy will have a normal pregnancy and delivery, an unchanged seizure frequency and over a 90% chance of a healthy baby.

Folic acid is a vitamin which helps protect against congenital malformations, such as spina bifida. It has also been shown to help brain development in babies whose mothers have taken some ASMs in pregnancy. It is current guidance that women with epilepsy on anti-seizure medications take a higher level of folic acid pre conceptually and at least throughout the first trimester of pregnancy. The exact amount should be discussed with your health care provider.

Clinicians cannot refer patients directly to the register, but you can provide your patient with a link to this website or give them our phone number.  If you are a research centre for the register you are able to directly recruit your patients via the links provided by the central team.  Materials to advertise the register are also available from us by emailing us at UKEPR@manchester.ac.uk

Please contact us at UKEPR@Manchester.ac.uk and someone will help you.

People’s participation in the UK Epilepsy and Pregnancy Register can be different depending on when you registered. Please contact us at UKEPR@Manchester.ac.uk and someone will help you.