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Scenario

Customer Jenny Walker is talking to technician Vicky about how things have been since she left university in the summer.

“I’m on this graduate training course and it’s hard work but such good fun,” says Jenny. “It’s how I met my boyfriend Ryan actually – he’s on the same scheme. We’re looking at flats at the moment as we want to move in together and I really think he’s the one – you know, the whole marriage and babies thing.”

“That’s great news, Jenny, I’m really pleased for you,” says Vicky. “But you know that your epilepsy medication – you’re on Epilim, aren’t you? – means that having a baby is a more complicated decision for you than it is for other women, don’t you?”

“Oh, it’s fine,” replies Jenny. “What’s the worst that can happen? The baby might have epilepsy, but I’ve had it for years and can cope with it.”

Answer

Jenny is right in that having epilepsy doesn’t preclude a woman from having a baby, but she seems unaware that the particular anti-epilepsy drug (AED) she is on (sodium valproate) substantially increases the risk of developmental disorders such as delayed speech and/or walking, poor language skills, low intellectual ability and memory problems, with around 30-40 per cent of babies exposed to the drug in utero experiencing such issues.

Valproate and related drugs also cause congenital malformations in around 10 per cent of cases. For this reason, the drug is not recommended for use in women of childbearing age unless other AEDs are ineffective or not tolerated. Jenny should have been informed of this and advised of the need to use effective contraception and seek medical support if she either falls pregnant or is planning a pregnancy.

The chances of Jenny having a baby with epilepsy are actually quite low, as the condition doesn’t have a very strong inherited component. Less than two people out of every 100 develop epilepsy at some point in their life, and less than five in 100 babies born to mothers with the condition develop it themselves. The risk is higher if both parents have epilepsy.

The bigger picture

According to the charity Epilepsy Action, high dose sodium valproate (above 1,000mg) is the anticonvulsant that most increases the risk of major congenital malformations such as spina bifida, hole in the heart and cleft palate. However, the risk is similar for women taking valproate plus any other AED, with high dose lamotrigine monotherapy, lower dose valproate and any anti-epilepsy combination that does not include valproate also posing a significantly higher risk. The risk of major congenital malformations with carbamazepine or lower dose lamotrigine is around the same as women with epilepsy who take no anticonvulsants at all, though clearly if a woman has a seizure while pregnant, she and her unborn child may be in danger.

The usual recommendation of 400mcg folic acid each day for women trying to conceive and during the first trimester of pregnancy is upped in women on epilepsy medication to 5mg per day during the entire time that there is any chance of conception and during the first three months of pregnancy. This is a prescription only dose and cannot be purchased over the counter.

It is worth noting that folic acid can alter the effectiveness of the anticonvulsants phenytoin, phenobarbital and primidone, which in turn increases the risk of seizures. All women with epilepsy who are thinking about having a baby should speak to a specialist medical professional so that a personal risk assessment can be conducted and options discussed.

Extend your learning

• Read the booklet for women of childbearing age who are being prescribed valproate produced by the Medicines and Healthcare products Regulatory Agency
• Find out about the risks of having a seizure during pregnancy
• Seizures differ hugely from person to person, from a simple partial seizure where the person feels strange but remains fully conscious to the tonic-clonic generalised seizure many consider to be characteristic of epilepsy. Read more details on these here
• Would you know what to do if someone had a seizure in the pharmacy? Read the information here.