The Seizure Diary and Communicating with Your Team

This chapter takes an in-depth look at a tool we've touched on in every previous chapter: the seizure diary. This simple-looking tool is the most powerful personal source of data you have in your child's treatment.

Why Is the Seizure Diary So Valuable?

Your doctor sees your child only a few times a year, and only briefly. You, on the other hand, observe the seizures within the flow of daily life. A regularly kept seizure diary turns scattered observations into a pattern your doctor can read, and helps answer questions like these: Are seizures increasing or decreasing? Did a new medication work? Are there specific triggers? Are the seizures clustering at particular times of the day or month?

What Should Go in the Diary?

• Date and time: When the seizure happened.
• Duration: How long it lasted (checking your watch).
• Type and appearance: What was the seizure like? (staring, stiffening, jerking, falling...)
• Possible triggers: Lack of sleep, fever, illness, stress, missed medication, menstrual period, etc.
• Medication information: The medication and dose being used at that time; the date if there was a change.
• Post-seizure state: Recovery time, sleep, mood.
• Notes: Any detail that catches your attention.

Modern Helpers

If you like, you can use the printed seizure diary template in the Appendix, or you can make use of seizure-tracking apps developed for smartphones.

Whenever possible, save seizure videos too; a single video can be more telling than pages of notes.

Making the Most of Follow-Up Appointments

Doctor's appointments can be short and busy. To make the most of this valuable time, prepare in advance:

• Write your questions down beforehand. It's very common to forget the most important questions during the appointment. A list makes sure you don't leave anything out.
• Put the most important topic first. Ask about whatever you're most curious or worried about at the very start.
• Bring your seizure diary and videos with you.
• Ask again about anything you don't understand. Saying "Could you explain that a little more simply?" is entirely your right. Understanding the medical terms is part of being a partner in the treatment.
• Take notes. Jotting down what's discussed at the appointment makes it easier to remember later. If possible, go to the appointment with a second person.