Emergency Medication and Protocols

An individual with Dravet Syndrome is very likely to have prolonged or repeated seizures as part of their condition. 

It may sometimes be necessary for you to give your child emergency medication to control their seizures. It is also important to work proactively with your medical team (doctor and epilepsy nurse specialist) to make sure there are individualised emergency protocols in place, tailored to the specific needs. 

As Dravet Syndrome is a rare condition it would be unrealistic to expect all medical professionals to know how it presents and how it should be treated, both on a day-to-day basis and in an emergency situation. 

We strongly recommend working proactively with your medical team to produce some protocols. The three we would recommend are:

1) Emergency seizure protocol

Detailing the medications to be used when the patient is seizing, the order in which to use them and the appropriate doses (mg/kg). For more information on why we need emergency protocols, and what information should be on them, please watch our series of videos with Professor Rima Nabbout. 

2) Ambulance protocol

Detailing the medications which can be used en route to the hospital and information about the measures needed to be taken upon arrival. You will need to work with your local consultant who will liaise with your local ambulance service.

3) General hospital protocol

There will be times when you just know that something is not right with your child, yet you can’t quite put your finger on it. A general hospital protocol would provide some brief information on Dravet Syndrome, any other diagnosis your child may have and what tests should be carried out, e.g. blood tests, swabs, checking ears, throat etc.

    Protocols should be on hospital letterhead and signed off by your consultant. 

    Once you have your protocols, we advise you to keep a copy in your child’s bag at all times, at their school/college/ residence, in the A&E department of your local hospital, at your GP surgery, with your ambulance station and on your local children’s ward.

    All protocols should include your child’s information, i.e. date of birth, address, current medications, allergies and contact numbers for your medical team.

    Template Protocols

    You can find templates for a Hospital Protocol and Emergency Seizure Protocol in our Dravet Family Guide. Download via our Resources page.

    Download the Family Guide

    Professor Rima Nabbout on Emergency Protocols

    Professor Rima Nabbout from Paris-Descartes University, Paris, is a paediatric neurologist and a leading expert in Dravet Syndrome. Click here for a series of short videos where she describes an emergency protocol, why it is needed in Dravet Syndrome and what information should be on it.

    View the videos