Managing Seizures

Working out how to manage seizures is a key part of treatment for Dravet Syndrome.

The right treatment

Early diagnosis and treatment offer the best chance of improving seizures and other aspects of Dravet Syndrome. Getting the person with Dravet Syndrome on the right treatment plan is key to managing seizures so that they become more stable. This can involve trying different medications for a period of time.

Find out more about treatment for Dravet Syndrome.

Seizure diary

Keeping track of triggers and other seizure-related information can be:

• helpful for understanding and monitoring seizure patterns
• useful for a medical team to see a possible connection between seizures and medications.

This can look like a simple diary or notebook filled in by hand, or an app or online diary. It could document major seizures, including how long they last, and whether rescue medication was needed, but does not need to record every small seizure.

Rescue medication

This is medicine given in an emergency situation to relieve symptoms quickly. This could be when a seizure lasts more than five minutes. The medication itself varies from person to person. For some, oxygen is used at home, especially when the lungs fail to exchange carbon dioxide and oxygen efficiently.

Find out more about treatment for Dravet Syndrome.

Reducing the risk of sudden unexpected death in epilepsy (SUDEP)

It’s vital that families, carers and medical professionals talk about SUDEP, no matter how difficult the conversation might feel. Regularly discussing SUDEP is important in working towards finding the best treatment and seizure control plan for the person living with Dravet Syndrome. They might talk, for example, about what can be done to reduce the risks through medication, diet or other treatment strategies.

Emergency seizure protocol

It’s important that families and carers work together with their medical team to produce an emergency seizure protocol. It will include what medications to use when the person with Dravet Syndrome is having a seizure, the order in which to use them, and the appropriate doses in milligrams per kilogram (mg/kg).

Find out more about putting together an emergency protocol and others here.

Planning for night-time seizures

Devices, like pulse oximeter machines that monitor a person’s heart rate and oxygen levels, can help to reduce the risks posed by night-time seizures.

Find out more about managing night-time seizures.

Filming a seizure

Making a video recording of a particular seizure can be very helpful. Parents and carers can share this with their medical team, and any teachers or other professionals who look after their child or adult, to help them understand how their typical seizures present. If the person living with Dravet Syndrome is able to consent to this before they have a seizure, ask them if they agree to this before making a recording.

Being aware of seizure triggers

Certain factors or events are likely to trigger a seizure for someone with Dravet Syndrome. These are difficult to fully predict, but an awareness of them can help with managing seizures in everyday life.

Find out more about seizure triggers.