The Heart of Diagnosis: History and Observation

Despite all the advanced technology of modern medicine, the most powerful tool in diagnosing epilepsy is still a good history. And the most important source of that history is you. This chapter was written to strengthen your role as the eyes and ears of your child's care team.

Why Is the History So Important?

Tests like EEG and MRI are very valuable; but none of them can show the doctor a “film of the seizure.” A seizure lasts only a few minutes and usually happens not in front of the doctor, but at home, at school, or during sleep. So your doctor largely learns how the seizure started, how it progressed, and how it ended from your account. The right diagnosis, the right syndrome, and the right medication all depend on the quality of that account.

How to Make a Good Seizure Observation

Witnessing a seizure is shocking, and it's hard to remember details in a moment of panic. That's why learning these three steps makes it easier: observe, time it, and record if you can. Here are the details your doctor will want to know:

• What was happening just before the seizure? Was the child awake or asleep? Did they have a fever, were they tired, were they hungry? Did they describe a “warning sign” (an aura)?
• How did the seizure start? Where was the first change? Did the eyes drift to one side? Was one arm or leg affected first? Or did the whole body stiffen at once?
• What happened during the seizure? Was there stiffening, jerking, or staring? Did the color change (turning blue, going pale)? Did they respond when you called them? Did they lose control of their bladder, or bite their tongue?
• How long did it last? This is the detail most often misjudged. In a moment of panic, seconds feel like minutes. Be sure to look at a clock.
• How was the child after the seizure? Did they come around right away, or were they sleepy, confused, or restless for a while? Did they have trouble speaking or moving?

The Most Valuable Tool Is in Your Pocket: Take a Video

If your child's safety is assured and there is someone else with you, recording the seizure on your phone is the most valuable information you can bring to your doctor.

A video shows more than pages of description, and often clarifies the diagnosis directly.

When recording, try to keep the child's face, eyes, and whole body in the frame. Safety first, then recording.

What Happens at the First Visit?

After taking a detailed history, your doctor will ask about your child's overall development, birth history, past illnesses, and whether there is anything similar in the family. Then they will do a detailed neurological examination: muscles, reflexes, balance, vision, speech, and developmental milestones are all assessed. This examination looks for clues to an underlying cause and helps guide the planning of any further tests.