Medication

Children and adults living with Dravet Syndrome normally need a combination of tailored anti-seizure medications.

These help to control or reduce their seizures. Keeping someone free from seizures is the ultimate goal of these medications, however, good seizure control in Dravet Syndrome is rare.

Medications used to treat Dravet Syndrome

The following medications may be used to treat the condition and aim to control or minimise seizures. Not all of them are suitable for everyone with Dravet Syndrome.

• Sodium valproate: Also known as ‘Epilim’, this drug can be injected directly into a vein in emergencies.
• Clobazam: This slows down the brain and body and may be used when someone hasn’t responded to other drugs.
• Stiripentol: This drug is added to sodium valproate and clobazam if someone’s seizures are not controlled with those on their own.
• Cannabidiol: Also known as ‘epidyolex’, cannibidiol is a chemical in the cannabis plant. As a medicine, it’s an oral solution which is a plant-derived cannabis-based medicine. It can be used with clobazam for people with Dravet Syndrome over two years old.
• Topiramate: This medicine is used to treat epilepsy in children and adults.
• Levetiracetam: This is approved to treat partial seizures, or as an add-on medication for partial, myoclonic and tonic clonic seizures. Find out more about these seizure types here.
• Bromides: An older anti-seizure medication, this is not prescribed much in the UK but may be by some Dravet Syndrome specialists.
• Fenfluramine: This is used as an add-on medication with two other anti-epileptic medicines, such as sodium valproate, for those aged over 24 months.

Medications that should not be used for children

In children, some medications can increase or prolong someone’s seizures if they have Dravet Syndrome. If they are used for a long time, these drugs can affect intellectual development. These medicines are called ‘sodium channel blockers’. They include:

• carbamazepine
• lamotrigine
• phenytoin (though this be useful when it is injected as an emergency treatment)
• oxcarbazepine
• lacosamide
• rufinamide.

Medications that should not be used for adults

In adults, sodium channel blockers should only be used to treat Dravet Syndrome when they are carefully monitored by medical professionals. They might be prescribed if a young person or adult receives a new diagnosis.

Overall, there is not enough evidence of the effect that sodium channel blockers have on adults because there haven’t been enough randomised controlled trials that have included them.

Prescriptions

People with Dravet Syndrome or other epilepsies are particularly sensitive to changes in medication. For this reason, in the UK, the NHS recommends that people with any type of epilepsy, including Dravet Syndrome, continue to get the same version of their epilepsy medicine, wherever possible.

If a brand name is written on the prescription, pharmacists have to provide that brand. If the person who prescribes epilepsy medicine wants to change the version, they should discuss this with families and carers first.

Further reading

There are a number of guidelines, statements and publications outlining treatment for Dravet Syndrome. These are:

• NHS guidelines on Dravet Syndrome, (section 6.1).
• NHS guidelines on using fenfluramine (Fintepla) to treat Dravet Syndrome.
• The International League Against Epilepsy classification and definition of Dravet Syndrome.
• Hierarchy of Treatment for Dravet Syndrome, including medicine given in an emergency to relieve symptoms quickly. 
• European consensus statement on Dravet Syndrome, a public statement by a team of experts in the field.
• North American experts in Dravet Syndrome consensus statement.