Actor Finds Inspiration Being the Father to His Hero

Actor Greg Grunberg is best-known for his television roles as Sean Blumberg on Felicity (1998-2002) and as Eric Weiss on Alias (2001-2006). He has also guest starred on the hit TV show, House.

Greg is starring in the second season of NBC's Heroes, in which a small group of everyday people wake up one day with incredible abilities. In Japan, an office worker teleports at will. In New York, a struggling artist paints scenes from the future. A high school cheerleader discovers she is unbreakable, and a single mom realizes she has a powerful alter ego. Greg plays a discontented beat cop in Los Angeles who develops the ability to hear other people's thoughts.

Heroes chronicles the lives of these people and the lives of others like them – whose destiny just might be saving humankind. Meanwhile, EpilepsyUSA spoke to Greg about a different kind of hero – his 10-year-old son, Jake, who has epilepsy.

What can you tell us about Jake?

Jake captures your heart the second you meet him. He's got such important qualities – unconditional love and unlimited spirit. A lot of kids have these qualities, and we should never try to take them away. Jake has built up incredible self-esteem, inner strength, character and a great sense of humor. If he thinks something's funny, he laughs with great enthusiasm.

He is a funny and wonderful son. All of my boys are my heroes. I always refer to Jake as my hero because – as frustrating as it sometimes becomes for my wife and me – Jake perseveres. Even though he can't always go to a swim party or get on his bike or do everything he wants to do, he never stops looking for other ways to be happy.

You can't tell that Jake has epilepsy unless he has a seizure. He's just as normal as he can be. And he's just really a very sweet kid.

What can you tell us about Jake's epilepsy?

Jake has both absence seizures and petit mal seizures, so he has been very difficult to treat. He is on six medications, and he has also received an implant. So, there are two things we keep for him at school – a magnet to stimulate the implant and Diastat AcuDial.

Currently, Jake experiences several seizures a day. Typically, his mouth will twitch and he'll start staring. Sometimes, the seizures are brought about by anxiety and sometimes during an illness which his body is trying to fight. For example, Jake woke up with a cold recently and had a big seizure. The big seizures, like grand mal, will predominantly be in the morning. For Jake, it's almost like his brain reboots. He'll get up and be fine for twenty minutes. And if he's quiet and seems out of it, I know something's coming. If he wakes up in the morning and he's sharp as can be and runs around being somewhat hyper, I know there's a fairly big seizure coming.

And we've learned enough to know that we don't have to call the paramedics anymore. Most of the time, Jake's seizures are manageable. Usually, they don't last longer than 15 to 30 seconds. If they last longer, we usually use Diastat AcuDial, and it's never failed us.

When was he first diagnosed and how did you feel?

We first noticed something different about Jake when he was almost seven. He just started staring for about three to five seconds. We thought he was simply daydreaming, because it really felt like he was in his own world. But it didn't last long enough that we thought there was something physically wrong with him. It just seemed like he was ignoring us. And to be honest with you, we would reprimand him for it by telling him to pay attention.

And then eventually we knew something was seriously wrong. Jake was having seizures, but we didn't know it at the time. When we went to the doctor's office for Jake's checkup, the doctor asked us to describe the episodes of staring. And, because I'm an actor, I acted out the behavior for him. Thank goodness he was a very experienced pediatric physician because he thought Jake might have epilepsy.

The doctor then asked Jake to hyperventilate, and sure enough, it brought on a seizure and a staring spell.

What did you learn from those early visits to the doctor?

After that visit to the doctor, we began keeping track of the seizures. We were doing everything possible to help Jake, but unfortunately we were referred to a pediatric neurologist who didn't specialize in epilepsy. And that's something I encourage people to do. If your child has epilepsy, get to a specialist in epilepsy – not just a pediatric neurologist.

While the pediatric neurologist was certainly competent, Jake became over-medicated a bit. Sometimes the medications would work, but then Jake would build up a tolerance to them and have more seizures. When he began having additional negative side effects, we got him to a specialist in epilepsy and it made all the difference.

Another challenge had been the fact that Jake was growing all the time, so his metabolism kept changing. To keep up with that, you definitely need a specialist to find the right medicines.

It's also important for parents to learn as much as they can about their child's condition. Doctors really appreciate the knowledge and first-hand experience of parents and caregivers. As a result of seeing Jake's seizures and tracking his symptoms with certain medications, the doctors are better able to adjust and balance the appropriate medications.

People who are on medicines and have had negative side effects should not be afraid to try something new. While changing medicine may bring on seizures, some people should take a chance on some of these new medicines because it may help them live a happier and more normal life.

How did you educate yourself about epilepsy?

Like a lot of parents who first learn that their child has epilepsy, we just tried to get as much information and talk to as many doctors as possible.

When Jake was first diagnosed with epilepsy, we knew nothing about it. Not a thing. And now that we're dealing with it, it seems as though everyone's got somebody in their family who has it. Talking to other people and other families has been very helpful.

When we first realized Jake had epilepsy, we met with Susan Pietsch from our local Epilepsy Foundation. She was so helpful in getting us oriented. She recommended some books and then we began subscribing to EpilepsyUSA. Every time the magazine comes out and there's someone like Alan Faneca, the pro football player, or the Olympic athlete [Chanda Gunn] on the cover, it makes Jake feel so special. And it lets him know he can do anything he ever wants to do. It really moves him when it's about someone who he watches play sports on TV.

I encourage all parents when first learning that their child has epilepsy, to run as fast as they possibly can to get it under control. Talk to your child's pediatrician. Go to a neurologist, a pediatric neurologist. Get with a specialist on epilepsy as quickly as possible. And keep asking questions. It's hard because you want to trust every single doctor you visit.

Epilepsy is one of those conditions for which there is not an immediate or obvious cure or treatment. And it may take some time to find the right medication that works. But keep running and do it as fast as you possibly can.

The Epilepsy Foundation says that "not another moment lost to seizures" and it's true — especially if your child is in the developmental years. Luckily, Jake's brain was fully developed before he started having seizures, but epilepsy still really takes its toll. The sooner you can get seizures under control, the sooner that you and your child can get back to a normal life.

One of the things that was incredibly empowering to us was just to talk to other people that are out there. All parents need to know that epilepsy is the second most common neurological disorder behind migraine headaches. There are millions of people affected by epilepsy, so we are not alone. Unfortunately, when you first have a child diagnosed with epilepsy, it can turn your life upside down.

Continuously talking with other parents and professionals really helps. Today, I don't hesitate to talk with people who are experiencing epilepsy. I know what they're going through and I know how much it helps to talk with other people.