Dravet syndrome is a severe form of epilepsy characterized by seizures starting from early infancy. Keeping a seizure diary is recommended for Dravet patients to track their seizures and identify possible seizure triggers.
What is a seizure diary?
A seizure diary is a useful — and arguably essential — tool to record information about Dravet syndrome or other types of epilepsy.
Before starting a diary, the information that should be recorded should be discussed with a doctor or nurse.
A diary should be used whenever a seizure occurs, and the information should be shared with a patient’s doctors, nurses, and caregivers.
Types of seizure diaries
There are different types of seizure diaries, including electronic ones and paper calendars.
Seizure tracker is an online seizure diary that enables patients and caregivers to track seizures electronically. Videos can be added to the diary, which can be shared with others, like healthcare providers.
Texting 4 Control is an electronic diary that offered by the Epilepsy Foundation that helps track seizures and medication times. It was developed for young people with seizures.
Using a seizure diary
Whenever a seizure happens, as many details as possible should be entered into the diary. This includes the time and date of the seizure, what kind of seizure it was, how long it lasted, and anything thought unusual that happened.
Taking note of the circumstances under which a seizure occurs can help to identify seizure triggers. This includes writing impressions of the person or immediate environment before the seizure started, such as whether the individual was stressed or exposed to high temperatures.
When a change in medication is made, the date of change must be written in the diary. Any side effects, improvements, or feelings of being worse should be noted so a professional could better judge its effectiveness.
If rescue medicines are used, note them with a mention of how well they appeared to work. This includes recording details about how long the seizure lasted and how severe it was.
A well-kept diary is also useful when preparing a seizure management plan. It provides information about which actions and medications worked best with previous seizures. Based on this information, a step-by-step plan that describes what to do when a seizure occurs can be developed.
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