Epilepsy midwife looks at risks around epilepsy drugs during pregnancy

Epilepsy specialist midwife and nurse practitioner Kim Morley looks at what the latest review on risks associated with epilepsy drugs during pregnancy means for women.

"The MHRA publication on epilepsy medications and pregnancy offers a comprehensive review of all the available up to date researched evidence on the risks/benefits associated with epilepsy medicines when taken during pregnancy.

You can read the full review here

This includes a comprehensive patient leaflet to ensure that information shared with women is standardised, individualised and accurate. Being equipped with this information will help empower women to feel central to decision making regarding choice and dosage of treatment.

Don't stop taking medication

Women are advised at any stage, including pregnancy and breast feeding, never to stop taking their epilepsy medicines without seeking urgent specialist advice, as suddenly stopping epilepsy medicines significantly increases the risk of harm from uncontrolled seizures. Instead, if women are fearful about their epilepsy medicine, we advise they seek urgent advice from their GP, specialist, or epilepsy specialist nurse. 

Positive pregnancy and outcome

Women and their families should feel reassured that the majority of women will have a positive pregnancy and birth outcome and women who have attended for preconception specialist counselling, are more likely to fall into this group.

If you are a woman taking an epilepsy medicine containing valproate or valproic acid, you are advised to have at least an annual specialist review of your treatment as this medicine is associated with the highest risk of harm to a developing baby when taken during pregnancy.

The valproate pregnancy prevention programme aims to reduce and eventually stop the use of valproate during pregnancy and you will be asked, where appropriate, to have long term reversible contraception and to sign the annual risk acknowledgement form. Further information is available from the valproate patient guide.

Specialist monitoring

From the outset of diagnosis and during a woman’s journey to motherhood, there should be regular, specialist monitoring of seizure control and response to treatment in order risks are minimised to the woman and her future developing child.

The balance between potential risks to the mother of having uncontrolled seizures versus the risks of a more complex treatment regime - sometimes this will include a valproate medicine - has to be carefully balanced so as to minimise the future risk of harm to a woman and her developing baby if that treatment is changed. This harm in rare cases can include an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy).

Epilepsy knowledge

As part of the preconception journey, a woman should be provided with accurate information about contraception and potential interactions with epilepsy medicines, safety, risk assessment advice (including risks if they were to stop taking their medicines), healthy eating, lifestyle and fertility advice where appropriate, eligibility to drive, folic acid supplementation and monitoring of physical, mental and social health.

It is also an ideal opportunity for women and their support networks to become knowledgeable about epilepsy, first aid and risk minimisation aids and equipment. The Epilepsy Society and other charities provide fantastic resources to help with this. Information designed specifically for pregnancy is also freely available from women with epilepsy.    

Care plan

Having a planned pregnancy and shared care plan in place, provides women with the confidence to contact their care providers from the outset of pregnancy in order they receive specialist professional support, promptly.

This is so important especially as the first few weeks of pregnancy before the first booking appointment with the community midwife can present with additional risks due to hormonal changes, morning sickness affecting absorption of medicines and for some women, a change in their usual seizure frequency or severity.

If women are not under epilepsy specialist care before pregnancy, they are advised to contact their GP urgently following a positive pregnancy test in order these referrals can be actioned, immediately.

During pregnancy, women with epilepsy  will come under a joint care pathway with the community midwife, GP, obstetrician, epilepsy specialist. If a woman has additional needs such as intellectual disability or mental health issues, additional specialist support should be offered.  

Some drugs when taken during pregnancy require women to have additional monitoring. For instance, this may include more blood tests or careful monitoring of baby’s growth.

More information

The information provided in the Epilepsy Medicines and Pregnancy patient leaflet will help provide women with the correct information depending on which epilepsy medicine they are taking.

If women experience side effects to their epilepsy medicine they can report this directly to the Medicines and Healthcare products Regulatory Agency on the Yellow Card website. 

In conclusion, the information provided in the epilepsy in pregnancy leaflet will help women feel central to decision making. Women will feel more knowledgeable and well informed about the potential risks and benefits of their epilepsy medicines when taken during pregnancy. This will also help determine their decision regarding future motherhood." 

Epilepsy Society Helpline

If you would like to talk to the issues raised here, please call Epilepsy Society's Helpline on 01494 601400 (Mon-Fri 9am-4pm, Weds 9am-7.30pm).