Jade Davies worries about whether her son's health problems may have been caused by her epilepsy medication, even though the drugs she was taking during pregnancy are considered to have a safer profile.
Jade Davies has two children – Lily, nine and Louie, five. Lily was born without any health problems while Louie has hyper-mobility, didn’t walk unaided until he was two and has a speech disorder which he is still being treated for.
Lily was born before Jade was diagnosed with epilepsy while Louie arrived after she was prescribed a variety of medications to try to control her simple focal seizures. Initially Jade tried carbamazepine but felt ‘like a zombie’ and was switched to lamotrigine. A year later she changed to levetiracetam.
Worries about medication
Although lamotrigine and levetiracetam are both considered to have the safest profile during pregnancy, Jade still worries that the medication may have caused Louie’s problems.
“The worries over medication during pregnancy were daunting,” she said. “The burden that the medication could be the reason for Louie’s health problems is heart breaking.
"So many children have speech and language difficulties but why would I have one child who is fine when I am not taking medication, and another with so many problems when I am? But I am so proud of how far Louie and I have come together.”
Cavernomas and stroke
Jade was diagnosed with cavernomas – clusters of abnormal blood vessels – after a bleed on her frontal lobe when she was 17. But she recovered well and a few years later went on to have Lily.
But when Lily was four months old, Jade was rushed to hospital with a stroke and it was only then that she mentioned the ‘funny sensations’ in her mouth which were later diagnosed as epilepsy, caused by her cavernomas.
Jade’s seizures still aren’t controlled with medication – sometimes she has as many as 12 seizures a day – but she has noticed a reduction in seizure activity when she reduces her sugar intake.
“Because my seizures aren’t controlled, I feel under a lot of pressure to try different medications but I know that I want to have another baby at some point and wouldn’t want to risk switching to a drug that posed even more risk for the baby.
“I feel very passionately that there should be lots more research to find out which medicines are safest.”
Find out more about our Safe Mum, Safe Baby campaign.
A report from the Commission on Human Medicines has shown that some of the most commonly prescribed epilepsy medications including carbamazepine, topiramate, zonisamide and phenytoin, pose an increased risk of harm to any baby exposed to them during pregnancy.
It is well established that valproate carries a high risk during pregnancy and should never be prescribed to girls and women of child bearing age unless they are part of a birth control programme.
Lamotrigine and levetiracetam are the safest drugs to take during pregnancy.
It is important that no woman should stop taking her medication without consulting her doctor. All girls and women of childbearing age should be called in for a review with their doctor so they can discuss their treatment options and ensure that they are on the safest possible medication for them.
Any woman who is planning a baby, should be referred to her neurologist.
Letter of support for a review with your GP
Our Medical Director, Professor Ley Sander, has written the following letter to support all women in requesting a review with their doctor.
Read about the challenges other women with epilepsy face when thinking about starting a family.