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.