This morning, Meredith moderated a panel on epilepsy with Dr. Nancy Snyderman, Susan Axelrod, the founder of the epilepsy advocacy group CURE, and Tiki Barber. WATCH VIDEO
Tiki and his twin brother, Ronde, suffered from seizures as children, and Tiki's older son, A.J., has had about 10 seizures, generally brought on by high fevers.
Before the segment, we talked about his family's history of seizures and what parents can learn from his experience:
DF: How old were you when you had your first seizure?
Tiki Barber: I think I was one when we -- talking about me and my brother -- had our first seizures. I don't know if it's genetic or coincidence, but we would always have them at the same time. So my mom was always extremely stressed about it.
Back then, they didn't have a lot of ways to treat it other than to pump kids full of phenolbarbitol. If you've ever seen a kid on phenolbarbitol, it's like he's a walking zombie. So they've come a long way.
We eventually grew out of it, after we were six or so. I have no lasting effects from it, but having seen my kid go through it, it's not easy.
DF: So you have no recollection of going through it as a kid?
Tiki: None. But my mom used to say that she'd thrown us in the pool when she sensed us getting to a certain point. And I remember always being at the pool when we were younger. That I remember, but I don't remember going through an episode.
DF: Before your older son, A.J., had his first episode, had you talked about the possibility of him having one with your wife?
Tiki: I think Ginny knew that I had had them. But it wasn't anything in my consciousness, because my son was past where I had started having them. Then one day, we were laying in bed together, and I could feel him getting hot, because it was making me hot.
So I moved him to another room, and 30 seconds later, he went into a seizure. I picked him up and ran downstairs. Luckily, we were only a block away from New York Presbyterian, so we took him there. He came out of it quickly, but it shocks you to see it.
DF: Has he had any since then?
Tiki: He's had probably 10, and by definition, he's epileptic. But it's only by definition. He doesn't have some of these lasting conditions that epileptic people have: memory loss, cognitive issues with development, etc. His condition is febrile, meaning in the presence of fever or when he's about to spike a fever; when he goes from normal to 102 in 10 minutes. He's predisposed to having a seizure, as I was predisposed to it.
Anyone who gets a very high fever can have a seizure, but some people are predisposed to it. I was, my father was, my brother was, my son is. But we grew out of it, and we're hoping that A.J. will grow out of it.
DF: Have you talked to him about any of this?
Tiki: We've talked about it, but he doesn't remember. He knows he was sick, but he doesn't know what happened. The only time we got scared was when I was actually playing in Philadelphia. It was the first game of the season, four years ago. He just fell over. It wasn't a convulsing seizure, and he got up after 10 seconds. But he was just in a daze.
Ginny knew something was wrong, so she took him to the hospital. Thirty minutes later, he went into a tonic seizure when his temperature spiked. That one scared us, because there was no fever when he had his first seizure. But it clued us in to the fact that we can tell when he's gonna have an episode.
We were in Hawaii for the Pro Bowl at a players' luau, and he just started to zone out. So we ran upstairs, put him in the bathtub with lukewarm water, and luckily we were able to control it by controlling his temperature, giving him motrin and tylenol. We always have to be aware, because you never know when it's going to happen.
Like I said, it's not dangerous, but you don't want your kid sitting around having a seizure.
DF: Now that you're talking about this more publicly, what do you want parents to take away from your story?
Tiki: I think parents need to be aware, because any kid can have a seizure. A lot of parents will see their kid have a high temperature, and they'll think, "Oh, it's just a temperature." But you never know when you're predisposed to having this disorder, so you have to keep an eye out.
But also, there's a stigma that comes with this word "epilepsy." I don't want to say that it's normal, because it's not normal, but it's just like any other condition. It needs to be researched, there needs to a cure for it, there needs to be awareness about it.
If someone had a seizure right now, would you know what to do? Most people wouldn't. It affects a lot of people.