Emergency Protocols

As Dravet Syndrome is rare, not all medical professionals will immediately recognise it and know how it should be treated. This is why it is essential that you have emergency protocols that are readily available and accessible. They can make treating someone in an emergency a lot easier.

Emergency protocols will make sure the same procedures are followed, wherever you are. To create them, families need to work proactively with their medical team, normally a doctor and epilepsy nurse specialist. 

We recommend creating three emergency protocols.

1. Emergency seizure protocol

This includes details about:

• medications that need to be used when someone is having a seizure
• their home emergency medication and instructions for administering it
• the order in which to use medications
• the appropriate doses of medications in milligrams per kilogram (mg/kg).

For more information on why emergency protocols are needed, and what information should be on them, watch our series of videos with Professor Rima Nabbout, a paediatric neurologist and leading expert in Dravet Syndrome.

2. Ambulance protocol

This should include medications that can be used on the way to the hospital and information about what should happen when someone gets there.

Families and carers need to work with their local consultant to write the protocol and they will liaise with your local ambulance service.

3. General hospital protocol

This is for times when a family member or carer knows something is not right with the person living with Dravet Syndrome. They can’t quite put their finger on it, but know that the person with the condition needs to be checked in to hospital urgently.

This protocol includes:

• brief information on Dravet Syndrome
• any other diagnoses the person has
• tests that should be carried out, for example, blood tests, swabs, checking ears and throat.

What other information should protocols include?

They should:

• be on hospital letterhead and signed off by your consultant
• include the date of birth and address of the person with Dravet Syndrome
• list current medications
• detail allergies
• have contact numbers for their medical team.

Where should I keep the protocols?

It’s a good idea to keep them:

• on your phone as an electronic copy
• in the bag of the child or adult living with Dravet Syndrome
• at their school/college/home
• with the local ambulance station
• in the local A&E department
• on the ward of the person living with Dravet Syndrome’s local hospital
• at their GP surgery.