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concerns around sodium valproate

Following media coverage of the public hearing into the risks associated with the epilepsy drug sodium valproate during pregnancy, we have received a lot of calls and enquiries from people who are concerned that their children may have been affected by the drug.

We have also heard from both women and men who feel they should stop taking the medication due to the risks.

Has my child been affected by sodium valproate during pregnancy?

If you are concerned that your child or children may have physical or neurodevelopmental problems caused by exposure to sodium valproate in the uterus, please contact your GP or doctor to discuss the issues.

With your GP you will be able to look at the medications you were prescribed during pregnancy and the dose you were taking. This will help you to understand whether this could have affected your children.

Read about how sodium valproate can affect a baby in the uterus

There is no simple test that can confirm a diagnosis of fetal valproate syndrome and symptoms can vary significantly from baby to baby. Instead a diagnosis may be reached by  eliminating other possible causes. This could include genetic testing.

Your GP will be able to signpost you to your local learning disability team who will be able to identify the right support for your child. If your son or daughter has now reached adulthood, your GP will be able to signpost you to the right support.

I feel guilty that my epilepsy medication may have caused my child's disabilities

Sodium valproate was first licensed for use in the UK in 1974. Its success in controlling seizures led it to be widely prescribed at a time when there were very few treatment options for people with epilepsy. It was another 20 years before more drugs became available, offering greater choice of medications with fewer side effects.

While in the 21st century there has been a push to empower women to be partners in their healthcare and to decide upon the best course of treatment in line with their doctor, this has not always been the case.

If you would like to discuss this further, please contact our Helpline team on 01494 601400 (Mon and Tues 9am-4pm and Wed 9am-7.30pm).

Should I stop taking sodium valproate?

Sodium valproate is a very good drug for controlling seizures and for some people it may be the only drug that will work. Today it is never recommended as a first line of treatment because of its potential risks during pregnancy. It should only be prescribed if benefits are deemed to outweigh the risks.

You should never stop taking your epilepsy medication without consulting your doctor or neurologist. Suddenly stopping medication could result in seizures.

If you are taking sodium valproate and discover that you are pregnant, consult your doctor straight away but do not stop taking the medication. In some circumstances, tonic clonic seizures can pose risk to both the mother and developing fetus.

Men and sodium valproate

There is no evidence to suggest that there is any associated risk for babies born to men who are taking sodium valproate. However,  some research suggests sodium valproate may affect the amount of sperm a man produces and the motility of the sperm. You should never stop taking your medication but should discuss this issue with your GP or neurologist. A simple test can check quality and quantity of sperm.

If you would like to discuss any of the issues around sodium valproate, please contact our Helpline team on 01494 601400 (Mon and Tues 9am-4pm and Wed 9am-7.30pm).

The Organisation for anti-convulsant syndromes (OACS) and FACS Association both provide information and support to families affected by fetal valproate syndrome. 

Are you receiving the right information?

Our sodium valproate survey showed us that almost 70% of the women surveyed haven't received new safety warnings about the dangers of taking it during pregnancy. Read the sodium valproate guidelines

Girls and women under 50, are you taking sodium valproate? Please read about this important information...