A peer reviewed maternity epilepsy toolkit1 designed to improve history taking, reduce risk, increase knowledge & awareness & provide a summary of a woman’s epilepsy management. Documentation starts at booking & continues throughout pregnancy & the postnatal period. Click PDF below to download as a four page double sided, colour document. It is intended that women with epilepsy have ownership of this toolkit and that it is stored within the maternity hand-held records. Click links on toolkit to download recommended resources. Copyright Kim Morley.
1. Morley K (2020) Reducing risks for pregnant women with epilepsy: A qualitative study exploring experiences of using a toolkit at the antenatal booking appointment. Epilepsy & Behavior Abstract
This is an exciting time and feel reassured that most women's seizure control will remain the same during pregnancy. However, others may experience an increase in seizures, a change in seizure pattern or severity, or an improvement in seizure control. Therefore, it is important to see your GP following a positive pregnancy test in order a prompt assessment is made of your epilepsy and treatment. The GP will then refer you to a community midwife for your booking appointment and a Consultant Obstetrician specialising in fetal/maternal medicine. If you are already receiving care from an epilepsy specialist team please inform them that you are pregnant. If you are not under the care of a consultant neurologist/epilepsy specialist, a prompt assessment should be made of your epilepsy and treatment and an appropriate referral made (please download the maternity epilepsy toolkit, above).
All women trying to get pregnant and up until 12 weeks of pregnancy are usually advised to take 400 micrograms (mcg) folic acid every day. This vitamin can help prevent baby having a neural tube defect resulting in conditions like spina bifida. If you take antiepileptic drugs (AEDs), there is a family history of neural tube defects, if you have already had a baby with a neural tube defect or if you have diabetes, it is recommended by the NHS that you take a higher dose of folic acid. This dose (5milligrams once daily) is prescribed by the GP before you become pregnant or if you are at risk of pregnancy. Your doctor will make sure this is a suitable dose for you to take with your antiepileptic drug regime. You will usually be advised to continue taking this dosage until 12 completed weeks of pregnancy. If you did not start this before you became pregnant or have been taking the lower dose you can purchase over the counter, see your GP promptly for individual advice about whether you are advised to start the higher dose. Also check out the NHS website for further advice and information: NHS Choices
When you see the community midwife let her know that you have epilepsy or a history of epilepsy and provide her with a description of your seizures. Let her know the date of your last three seizures. Take along your AEDs and repeat prescription. Inform the midwife of possible triggers for your seizures. It would be helpful to bring along a witness of your seizures to help describe what happens. To assist maternity care, a multi-professional shared care plan will provide a summary of your epilepsy; please download the maternity epilepsy toolkit (PDF) at the top of this page.
As pregnancy can be an unpredictable time for seizures even if you have been seizure free for many years, showering instead of bathing is safer to reduce the risk of drowning if you were to have an unexpected seizure. Avoid using a jacuzzi or Hot Tub and standing close to a water's edge whilst alone; including leaning over a bath. If you use the swimming pool, inform the life guard you have a history of epilepsy and always try to swim with a buddy. Try to avoid sleeping alone, especially if you have a history of sleep onset seizures. If you have no choice, you may benefit from using a safety pillow however, research in this area is inconclusive. For further information click: Epilepsy Society safety aids It is important you know how to reduce the risk of sudden unexpected death in epilepsy Seizures and risk. To help you with this do your own risk assessment by downloading this award winning app on your smart phone or tablet: EpSMON-Epilepsy self monitor app. It is easy to do and will provide you with an individual risk assessment and score and identify how you can reduce your risks.
If your epilepsy has been well controlled for at least 9 months before pregnancy, it is more likely to stay controlled during pregnancy1. There is evidence that pregnant women with focal epilepsy are more likely to have seizure recurrence than women with generalised epilepsy2. Blood levels of some AEDs reduce during pregnancy; this may lead to an increased risk of seizures. Therefore, your specialist may recommend therapeutic drug monitoring and support from an epilepsy specialist especially if you are taking lamotrigine or levetiracetam2. If you do have an epileptic seizure in pregnancy, you will need to surrender your driving license for one year. This can be shorter for some people experiencing a first epileptic seizure. For further information, click Epilepsy & Driving
If you have a history of prolonged convulsive seizures, status epilepticus or more than one convulsive seizure occurring without regaining consciousness between seizures; it is important to have an emergency medication management plan in place; please discuss this with your epilepsy specialist.
Suddenly stopping or reducing AED dosage may cause an increase in seizures and risk to your life. If you are concerned about the effect of AEDs on your unborn baby, discuss this urgently with your GP or contact the UK Epilepsy and Pregnancy Register (details below); please do not just stop your AEDs.
7/01/21 Click GOV.UK for latest safety leaflet on epilepsy medicines and pregnancy to help patients and their families understand the risks.
06/05/20 Temporary advice during coronavirus (COVID-19) for valproate pregnancy prevention programme. Click: GOV.UK Women age 12 to 50 years taking sodium valproate or valproic acid. Brand names are: Epilim, Epilim Chrono, Epilim Chronosphere, Episenta, Epival, Depakote, Orlept, Valpal, Kentlim and Convulex. Click: Valproate Patient Booklet and Valproate Patient Card for information on valproate and risks to a developing baby in pregnancy. If you are concerned about the effect of your epilepsy medicines on your unborn baby, discuss this urgently with your GP. See below for further information. Information for girls and young women taking sodium valproate, click: Medicines for Children. Click: Care of baby & you further information of support groups.
You may need to alter the times you take your AEDs. If vomiting is causing problems taking your AEDs, contact your doctor urgently as vomiting and diarrhoea can affect the absorption of your AEDs and cause recurrence of seizures. It is important that you stay hydrated and you may be prescribed treatment to stop you being sick. If you are admitted to hospital, it is important you are not placed in a single room and that you are assessed urgently and regularly by a senior obstetrician. If you are unable to take your AEDs because of continued vomiting, your medication will need to be administered intravenously, instead.
There is a small increased risk of harm to a woman and her developing baby during a tonic clonic seizure. This is especially if the seizure is prolonged. Convulsive (tonic clonic) seizures arising from sleep, particularly is these are unwitnessed, are more likely to be associated with an increased risk of sudden unexpected death (SUDEP). To protect yourself, try to always remember to take your epilepsy medicines and urgently contact your healthcare team if you have a change in seizure control.
Ensure family/friends are aware of appropriate first aid. Where possible, avoid sleeping alone and shower rather than bath. Be cautious around water's edge including leaning over bath. Your family are advised to urgently obtain help by dialling 999 (in the UK) if this is a first seizure; convulsive seizure lasting 5 minutes or two minutes longer than the usual time of your seizure; if you have a convulsive seizure but do not gain consciousness before having a further seizure; if you have suffered harm or if additional help is needed. If you have a history of prolonged seizures or repetitive seizures (clusters) please ensure your doctor or epilepsy specialist formulates a managment plan and information session for you and your family about the administration of emergency (rescue) medication.
Please ensure that your own healthcare team are informed if you have recurrence of seizures in pregnancy. Depending on what happened, they will advise whether or not it is necessary for you to be seen urgently for monitoring of you and your developing baby. Click on: Epilepsy Society First aid for convulsive seizure
The information from the register has identified which AEDs are safest for women to take during pregnancy. Joining the register is a simple process of providing information about your treatment. Details about baby’s health will be collected a few weeks following delivery from your GP.
For visitors from the USA and Australia:
The North American Antiepileptic Drug Register, click Pregnancy Registry
Australian Pregnancy Register Registration, click: Registration
You will be offered the same blood screening tests as other women at booking, 12 weeks and 28 weeks. In some cases, additional blood tests are recommended for antiepileptic drug monitoring. Please discuss this with your care providers as despite a large study looking into this, there is no there is no evidence that regular monitoring of anti-epileptic drug levels in pregnancy improves seizure control compared with basing your anti-epileptic monitoring on clinical features3.
A dating ultrasound scan will be offered at 12 weeks and a fetal anomaly scan between 18-22 weeks. Each woman with epilepsy will be assessed on an individual basis as to whether they require further scans to provide addtional monitoring of their baby's growth. Epilepsy and taking antiepileptic drugs is not an indication for amniocentesis.
In my years of experience of having the privilege of caring for women with epilepsy, I have found that the majority of women are wonderful mums to their children and extremely aware of the additional measures to put in place to maximise safety. However, some women have great concerns as to their ability to parent because of epilepsy. They can feel isolated and find this difficult to discuss with anyone. Do discuss any concerns you have with your care providers and I have added some useful links and information on Care of baby & you. Technology now enables women to get an insight into what it is like to be pregnant and care for children when you have epilepsy. These two blogs have been written by mums with epilepsy and will take you on that journey: Becoming a mum with epilepsy and FairyFaye1986.
New: Join the big conversation' women with epilepsy Facebook support group. Click women with epilepsy
This is no longer recommended in the antenatal period. Instead, it is recommended that you consent to your baby receiving an injection of vitamin K following delivery as it is more effective than vitamin K oral medication in reducing the risk of haemorrhagic disease of the newborn. NHS UK What happens straight after the birth
As well as the influence pregnancy has on the way your body processes your AEDs, forgetting medication, lack of sleep and stress are probably the most common reasons seizures may recur in pregnancy. To reduce these triggers, it is important to find out whether your AED dosage may need adjusting in the pregnancy; please discuss this with your specialist team. Using medication reminder techniques will help reduce the risk of forgetting to take your AEDs. Please click on Epilepsy Society and look at their strategies & tools for taking epilepsy medication.
Infections are more common during pregnancy due to the unique changes that occur in your body. Please ensure that you report any signs of infection to your care providers as soon as possible and take extra safety precautions with your epilepsy as infection can be a trigger for seizures.
Only about 3 in 100 people with epilepsy have photosensitivity. If you have this condition please obtain further advice to protect yourself from this potential trigger of seizures from: Epilepsy Action: Photosensitive epilepsy
Many pregnant women have sleep disturbance; this can be particularly troublesome for women with epilepsy as it can increase the risk of seizures. Do ask your midwife for advice and support. Further self-help information can be obtained from Epilepsy Action: Sleep
Stress can also be a trigger for seizures. An example of this can be when something feels unjust. It can be really hard to switch off to it and this in turn can impact on well-being, confidence, self esteem and sleep. For whatever reason, If you are struggling with stress, anxiety, depression or a more serious mental health condition, please discuss this promptly with your healthcare providers.There are also excellent resources available from: Royal College of Psychiatry: Mental health in pregnancy; NHS Choices moodzone: toolkit for management of Stress, Anxiety & Depression; NHS: Mindfulness and NHS: Cognitive Behaviour Therapy
It is important to consider your safety when travelling away from home. Always ensure that you have your antenatal hand-held notes with you together with an ample supply of your medication and treatment. If you are travelling abroad, do ensure that you have packed in your hand luggage the correct travel documents including travel insurance, your antenatal hand-held notes, an ample supply of your medication together with the repeat prescription. For further information click Holiday safe pregnancy travel insurance guide and link to the Epilepsy Action website Travelling abroad for people with epilepsy.
1. Harden C, Hopp J, Ting T, Pennell P, French J, Le Guen C, et al. Practice Parameter update: Management issues for women with epilepsy-Focus on pregnancy (an evidence-based review): Obstetrical complications and change in seizure frequency Report of the Quality Standards Subcommittee and Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and American Epilepsy Society. Neurology 2009; 73(2): 126-132.
2. Battino D, Tomson T, Bonizzoni E, Craig J, Lindhout D, Sabers A, et al. Seizure control and treatment changes in pregnancy: observations from the EURAP epilepsy pregnancy registry. Epilepsia 2013;54(9):1621-7. 3. Thangaratinam S, Marlin N, Newton S, Weckesser A, Bagary M, Greenhill L, et al.AntiEpileptic drug Monitoring in PREgnancy (EMPiRE): a double-blind randomised trial on effectiveness and acceptability of monitoring strategies. Health Technol Assess 2018;22(23) Author: Morley K (2021) Pregnancy toolkit for women with epilepsy. Available from:www.womenwithepilepsy.co.uk