Amy & Cianna’s Story
When Cianna was about two and a half she started falling down unexpectedly and her eyes would go funny. So we took her to the pediatrician, but couldn't repeat what happened. When it did recur, we went to the emergency room, then back to the pediatrician, who then sent us to a neurologist. Cici had a seizure right there in the neurologist's office and was immediately put in the hospital. When we finally got the diagnosis, my husband and I were utterly relieved that it was epilepsy; our big fear was a brain tumor. So epilepsy—which is completely treatable—was really good news for us.
One of the first questions they asked was "Is there epilepsy in your family?" There wasn't any in my family and my husband's family is Chinese so nobody talked about it. We found out a few months later that his first cousin has epilepsy, but they didn't want to talk about it, so we had to keep asking.
When we first got the diagnosis of epilepsy, of course, we went to the Web. I got on some forums trying to figure out how to communicate to a small child about this. They explained to me in their adult words what it felt like and then we came up with the word "buzzy." So buzzy is a way I use to communicate with her about what's going on. It's a way that doesn't make her feel like she's being set aside, and—according to the folks I was talking to—it's pretty accurate as to what it feels like. So we're teaching Cici to talk about it too:
[Talking with Cici] Do you remember when you were having buzzies, did you feel funny? No? Everything just went black huh? Kind of like that.
What do you do when you're having a buzzy? You sit down, and you put your hands over your eyes, and you wait for it to be over right?
Do you like your doctors? The doctors are pretty nice, aren't they? Yeah and you get stickers!
And do you ever ask questions? What kind of questions do you want to ask? You could ask a question about what's going on inside your head. You can ask a question like, "How long am I going to have to take that medicine?" Or you can ask a question like, "How often do I get to come back here to this office?" And you can ask a question like, "What sort of great stuff do you have in the toy chest in the office?"
She's had the seizures under control with medication for over a year now and there's a chance she's going to grow out of it. It's been fine; she has to take medication twice a day but it doesn't affect her in any other way. She's otherwise an absolutely normal four year old.
