Leo's mom heard a gurgling sound from his room just before 5 in the morning. When she turned on the light, the right side of her 7-year-old's face was twitching. He was drooling and could not talk, but his eyes followed her. A minute later, it stopped. He said his mouth felt "buzzy," and then he fell back asleep.
By the time they came to see me, she had told the story many times: to the 911 operator, in the emergency room, to his pediatrician. Each time, she worried she was leaving something out.
The first EEG was normal.
That was the part she could not make sense of. "If something happened in his brain," she asked, "why didn't the test see it?"
I told her what I tell many families. A routine EEG is a short look, usually 20 to 60 minutes. Leo was awake and alert for nearly all of it. The kind of brain activity I was looking for often shows up mainly in sleep.
A normal EEG is a snapshot, not a verdict.
So we made a plan. Keep a video if it happens again. Write down the time and how long it lasts. Come back for an EEG after a short night's sleep, so Leo could nap during the test.
Three weeks later, she sent me a video: the same twitching, the same drool, at 4:40 a.m. Ninety seconds long. Then came the second EEG. Within minutes of Leo falling asleep, the tracing filled with sharp waves over the left central and temporal area.
This pattern has a long name: self-limited epilepsy with centrotemporal spikes. Many families know it by its older name, Rolandic epilepsy. It is one of the most common epilepsies of childhood, and most children outgrow it by their teens.
We talked about whether Leo needed daily medicine. For some children with rare, brief seizures in sleep, families and doctors choose to watch and wait. For others, medicine makes sense. There is no single right answer, only the right answer for that child and that family.
Leo's mom left with a Seizure Action Plan for his school and his grandparents. She also left with a different question than the one she came in with. Not "Why was the test normal?" but "What do we watch for now?"
That is usually the better question.
What this story shows
A normal EEG does not rule out epilepsy. Read why
Sleep can bring out changes a short awake EEG misses.
Your videos and notes are some of the most useful things you can bring to a visit.