Dravet syndrome is a serious epilepsy disorder. Patients experience severe seizures accompanied by high fever from infancy. For older patients, stress or increased body temperature can sometimes trigger seizures.

It is important for patients and caregivers to have an emergency seizure management plan, which also may be called a seizure response plan, or a seizure action plan.

What is an emergency seizure management plan?

An emergency seizure management plan is a written document that alerts caregivers and bystanders about who the patient is. It includes basic information, such as age and physical description, as well as emergency contact information for their parent, guardian and primary care physician.

A seizure management plan should describe the type of seizures that have been observed previously in the patient and a description of each type, as well as the physician’s recommendations for emergency first aid.

A seizure management plan lists all medications the patient is taking, when they are taken, and their dosages. The name and contact of the prescribing physician should be included.

How to develop a seizure management plan

There are many online resources to get you started, but any good plan should be made in coordination with both a medical team and parents or caregivers.

Some examples and templates of seizure management plans can be found on the websites of the Epilepsy Foundation, Epilepsy Queensland, and the Epilepsy Foundation of Greater Los Angeles.

Where should the seizure management plan be kept?

It is a good idea for the patient to carry a copy of the seizure management plan, and also give one to caregivers at school, daycare facilities, and home.

The seizure management plan should be updated and checked after every appointment with the physician or treatment team. It is important to discuss the seizure management plan regularly with caregivers, including nurses and teachers.

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Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.