Batten disease is a serious genetic disorder that causes progressive loss of muscle control and cognitive ability as well as seizures. It is recommended that patients and their caregivers keep a seizure diary to identify potential triggers and keep track of medications and their side effects.

What is a seizure diary?

A seizure diary is a record of each seizure that includes as many details about the episode as possible. Recording details is important since seizure triggers can include a certain time of day, food, scents, or activities.

Patients should also keep a record of medications, treatment schedules, and any observed side effects from either illness or treatments. Having this information written down in one location allows patients, caregivers, and health professionals to identify patterns and, in response, optimize treatment and improve patients’ quality of life.

How to keep a seizure diary

Seizure diaries can be a written paper log or an online or mobile device record.

Many patients now prefer to use free applications on their phone or mobile device, since these can be programmed as medication reminders. Many applications can also include the data from seizure alarms, which many patients use to alert caregivers or health professionals about their seizures. Seizure diary applications are available from the Epilepsy Foundation and Epilepsy Action.

A seizure diary called seizure tracker is available online. Printable paper calendars, such as My Seizure Event Diary and My Monthly Seizure Calendar, also allow patients to choose the type of seizure diary most useful and accessible to them.

When seizures occur, patients (or their caregivers) should record as much information as they can remember. Patients may not remember all the details of what happened before or during a seizure, so it is important for caregivers to record their observations as well.

If emergency medications are given, that information should be recorded in the diary, along with the details about the seizure.

Other information

A seizure diary should be kept along with an emergency seizure management plan and be taken to every doctor’s appointment so they can both be kept up to date with current medications.

The seizure diary can also be used to develop an emergency seizure management plan, using the information on which emergency seizure treatments worked and which were less effective.

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Batten Disease 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.