Back in November, I wrote in “Wanting Answers, Finding Questions” about the seizure my nine-year-old daughter, “Emmie,” suffered. It came seemingly out of nowhere; to our knowledge, she’d never had one before. (I referred to it then as a grand mal seizure, but I now know it was actually what’s called a tonic-clonic seizure.) The weeks that followed made us feel like we were traveling through a maze characterized by a set of unmarked doors at each turn. Each door we opened only led to rooms with more doors, and we feared as we moved forward that our ultimate destination would turn out to be a dark, ominous place.
But we were lucky.
The maze of diagnostic tests and consultations led to us to the room of benign rolandic epilepsy, something none of us had heard of before. Given all of the terrifying possibilities raised by a sudden, significant seizure with no prior history—I won’t list them here; I’ll let you imagine them, as we did—this was one of best answers we could have received to the question, “What happened?”
Benign rolandic epilepsy (also known as Benign Rolandic Epilepsy of Childhood, or BREC) refers to a type of epilepsy originating in the rolandic area of the brain, which controls facial movements. During seizures, kids may experience facial twitching, numbness or tingling, they may have difficulty speaking, and they may drool due to an inability to control the mouth muscles. In some kids, the seizures can spread from the rolandic area to the rest of the brain and induce tonic-clonic seizures with more generalized symptoms: unresponsiveness, muscle-clenching in the whole body, whole-body convulsions and disorientation when they regain consciousness. BREC seizures often occur in sleep, though they can occur during awake hours, too (as Emmie’s did).
The best thing about BREC? It is a childhood-only disease. It will disappear by the time Emmie is fifteen years old, if not before. And while Emmie may have additional seizures, it’s also possible she may never have another one. At this point, we are not treating her with medication, and we will only revisit that decision if she starts having more frequent seizures.
I stopped the doctor after she said that the epilepsy would disappear by the end of puberty. “You seem so definitive,” I said. I’m not used to that in medicine. “Are you really that sure?”
“Nothing is ever one hundred percent,” she said with the intonation of someone delivering a required condition. Then she smiled. “But, yes. It will go away.”
For the next few years, we watch Emmie carefully. Rest is important. Seizures are slightly more likely to occur if she is overtired, so we work hard to fit her required sleep into our busy schedule. Sleepovers with friends make me a little nervous—we all know how poorly named such events are—but I’m not going to take away Emmie’s life as burgeoning tween. When she comes home from a sleepover, we send her upstairs for a nap—or at least a quiet rest period.
We learn as we go, too. Rapid flashing lights don’t always trigger seizures in people with epilepsy. Recently, however, a photographer was taking a family photo with a flash, and clicked the shutter several times in succession. Emmie immediately turned pale and grabbed her forehead. “My head,” she moaned. Now we know.
My own behavior has required some adjustment as well. Emmie told us that just before her seizure, she felt sick, but she didn’t have time to tell anyone. During this winter’s seemingly endless cold-and-flu season, she related to me several times that she felt a little nauseous. Each time, I responded by asking, “Does it feel like the nausea before you had your seizure or does it feel like regular being sick?” I finally realized I was turning her into a seizure-fearing pack of nerves. Rein it in, mom. Take deep breaths. Eat chocolate. Cope some other way. You are not helping your child.
The moment the pediatric neurologist sat down with us and pointed out the irregular spikes on Emmie’s electroencephalogram (EEG) results, explaining that these marked the epilepsy in her brain-wave patterns, any of my throat muscles that weren’t already in spasm since I learned of Emmie’s seizure tightened to the point of threatening to cut off my air supply. I found it difficult to focus on the neurologist’s words, because my head filled with, Oh no what does it mean oh no what does it mean. Life, changing, forever. Mine, yes, but especially hers. The rest of her life.
Then: reprieve. Relief. She will be okay. That child, that person whose life matters more than my own will be just fine. Adjustments, learning experience, more hugs than there are days between now and the end of the illness, and the world keeps turning. Thank you, universe.