Before becoming pregnant, it is best to seek pre-conceptual counselling from your epilepsy doctor or specialist nurse. You should be seen by an epilepsy expert to discuss your treatment well in advance of a pregnancy, ideally up to two years beforehand. If your pregnancy is planned carefully then the risk of complications may be minimised.
The primary aim in doing this is for seizure freedom before conception (where possible) and during pregnancy (particularly for women and girls with bilateral tonic-clonic seizures). Your team will also consider the risk of possible effects of Anti-Seizure Medications (ASM) during pregnancy; assess using the lowest effective dose of each ASM; and avoid using multiple medications if possible.
It is advisable for some women on certain ASMs to have an anti-seizure medication drug level taken prior to becoming pregnant. This is measured by a blood sample, and it is used as a reference point should you experience any seizures whilst pregnant.
This level should be taken either early in the morning prior to your first morning dose of medication or at least 5 hours post your morning dose. This can be arranged by your GP, neurology or obstetric service. It is important to remember the time that the blood level was taken as it should be taken at the same time every time going forward for comparison. You should discuss with your epilepsy doctor or specialist nurse if your particular ASM level is required in pregnancy. Monitoring of your ASM level may be useful to help plan future changes to your seizure medication. The potential risks and benefits of adjusting treatment, if necessary, can be discussed with you at your epilepsy appointment and is decided on a case by case basis.
Advice on diet, smoking, alcohol, avoiding infection, etc. will be the same for any woman planning pregnancy. However, other things may be more pertinent for women with epilepsy, including the following:
- In some cases, it may be wise to change to a different ASM which is less likely to cause harm to a developing baby.
- It may be an option to stop or reduce the dose of your treatment before you become pregnant if your seizures have been well controlled. However, deciding to come off ASMs can be a difficult decision. Factors such as the type of epilepsy that you have can be important and can influence this decision. For example, if you have the type of epilepsy that causes severe tonic-clonic seizures, there is a risk that you could have a severe seizure when you are pregnant if you stop your medication.
- You are advised to take folic acid prior to becoming pregnant. This should ideally be taken at least 3 months before you become pregnant and continued until you are 14 weeks pregnant. Although folic acid is recommended for all women who are pregnant, please check the best dose suitable to you with your epilepsy specialist. Taking folic acid has been shown to reduce the risk of having a baby born with a spinal cord problem such as spina bifida.
Becoming pregnant outside of pre-conceptual planning
If you have become pregnant without pre-conceptual planning from your epilepsy team (as outlined above), once your pregnancy is confirmed, we would advise that you contact your GP and Epilepsy clinical team to inform them of your pregnancy - as the care given to you may need to be tailored to your epilepsy. We would also advise booking your antenatal care appointment as soon as possible thereafter; many of the maternity hospitals in Ireland have an established epilepsy clinic on site. If you are unsure on this, check with your GP or epilepsy specialist.
Pre-Conceptual Planning clinics
Currently there is a pre-conceptual service available with an Advanced Nurse Practitioner in epilepsy at the Coombe, National Maternity and Rotunda Hospitals, Dublin.
In general, the clinic provides women with epilepsy with the space and time to investigate their epilepsy history to be reviewed and for them to be given the most up to date information on anti seizure medications. It is recommended that women are referred at least one year before trying to conceive.
If you would like to be referred to this service please attend your GP/ Consultant Neurologist for a detailed referral letter to the epilepsy pre-pregnancy clinic explaining the reason for the referral. The referral can then be sent to one of the hospitals listed above depending on your personal choice.
Key considerations and advice for women with epilepsy and planning a pregnancy
- If you are thinking of starting a family, seek out the advice of your epilepsy specialist team before doing so. As outlined above, there are key considerations that can be taken account of before coming pregnant - all designed at keeping you and your baby safe during any prospective pregnancy
- Remember - epilepsy is an individual condition, and pre-conceptual care is tailored to your individual condition - this is why it is important to have these important discussions prior to becoming pregnant so that your care can be tailored to your specific needs and your own epilepsy
- If you have become pregnant outside of pre-conceptual planning, contact your Epilepsy team without delay to arrange an appointment to review your care.
- DO NOT stop taking your ASMs under any circumstances without seeking the advice of your specialist first
Should you need any further clarity on the information contained within this section of our site, please do not hesitate to contact your local Community Resource Officer. Our Community Resource Officers will not be able to provide clinical guidance or advice but they may be able to provide further information should same be required or if you have any concerns. You can find their details by visiting the 'Our Local Service' section of our website.