Actor Greg Grunberg’s Son’s Brave Battle with Epilepsy
The Heroes co-star was shocked when his 7-year-old was diagnosed with epilepsy. Grunberg educated himself about the neurological disorder – and now teaches others about epilepsy through a celebrity-studded Web site called TalkAboutIt.org.
By Ian Hodder
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The actor Greg Grunberg plays a police detective with special powers on the popular TV seriesHeroes. But he became a detective of a different sort when his smart, athletic, and otherwise healthy 7-year-old son, Jake, was diagnosed with epilepsy six years ago.
Until then, the actor (who also starred in the hit showsAliasandFelicity) had been unfamiliar with the neurological condition. In his quest to help control Jake's seizures, Grunberg has learned a lot about epilepsy and the need to boost the public profile of the disorder. He tapped his tech skills - Grunberg cocreated the smart-phone app Yowza - to launch (sponsors include UCB and Ortho-McNeil Neurologics), a star-packed forum for epilepsy info and dialogue.
While he was in Washington, D.C., recently to advocate for epilepsy awareness, Grunberg spoke to Everyday Health about his son's experience.
Everyday Health: How did you discover your son had epilepsy?
Greg Grunberg:Jake started having staring spells right before he was 7. We thought he was daydreaming or ignoring us, because there was no movement with his head at all. He would just daze out. Looking back, we feel terrible, but we would say, "Jake, pay attention."
At his 7-year checkup, we told his pediatrician. I imitated Jake's staring spells, and since I'm the greatest actor on the planet, the doctor could immediately see that something was going on. He asked Jake to hyperventilate, and that brought on a seizure. It was terrifying.
To his credit, the doctor said, "I'm not a specialist, but I have a feeling this may be epilepsy." He sent us to a neurologist, and eventually we got to an epileptologist. That's my big push right now - to encourage people to get to a neurologist who specializes in epilepsy.
Everyday Health: How old is Jake now?
Greg Grunberg:He's 13. We've been dealing with this for six years, and he's pretty much had every type of seizure: drop attacks, staring spells, petit mal, grand mal, tonic-colonic. With epilepsy, everybody's different. Some people start having seizures after head trauma or a brain tumor. With Jake, it's just the way his brain is wired. Nothing happened that brought this on.
Everyday Health: Describe his treatments.
Greg Grunberg:Over the course of six years, we've tried a bunch of different treatments. Some medications had adverse side effects - made him sluggish and stuff like that. We've also gone back to medication that we tried originally, to see if the side effects no longer affected him in the same way.
We did vagus nerve stimulation - VNS - and that seemed to help. [In VNS therapy, doctors implant a pacemaker-like device in the patient's chest that sends electrical pulses to the brain via the vagus nerve in the neck.] It's still implanted, he still has it, and it's on. We tried theketogenic diet. For all of this, by the way, we never made any decisions on our own. This is all per our doctors' recommendations.
We never thought Jake was a candidate for surgery, but his seizures were getting worse and worse. A year and a half ago, tests found a hot spot in his brain. It was operable, and the doctors thought that most of the seizures were coming from that area. Immediately after the surgery, Jake was 90 percent better. We were very, very lucky; not everyone is a candidate for surgery.
Everyday Health: How is Jake's life different from that of a child who doesn't have epilepsy?
Greg Grunberg:To somebody who does not witness Jake having a seizure, he's like every other kid. He wakes up, and we have to watch him because that transition from sleeping to waking up can be difficult. When he takes a shower, he can't be alone, so I have to be there with him. He's basically shadowed wherever he is, just in case.
Seizures are not the scary part. He's able to ride out the seizures, as most people are. The issue is, God forbid, if he falls or he's holding something like a toothbrush that could go down his throat. Talking about this issoimportant.
Everyday Health: Explain the goals of your Web site - TalkAboutIt.org.
Greg Grunberg:I talk aboutepilepsywith Jake's teachers, coaches - everyone who might be around him. I talked to Jake's PE class. I'm onHeroes,so that broke the ice, and I was funny, but the message was clear: If Jake starts having a seizure, catch him! Put him on the ground easy, and on his side so he doesn't choke. Put something under his head so he's comfortable, and let the seizure ride itself out. Call a teacher. Call us. Call the paramedics if it lasts too long.
And sure enough, Jake was running a mile atschool, and he had a seizure. I was waiting for him outside school when I got a call saying that he'd had the seizure. I started jogging across the schoolyard, and one of the kids in their PE uniforms calls out, "Hey, Mr. Grunberg! Jake had a seizure! But I got him! I caught him! He's fine!" That alone was such an incredible moment for me.
The other aspect of Talk About It! is to tell people that you're not alone. Five million Americans are dealing with epilepsy or seizures. The resources are out there. You can meet other people. TalkAboutIt.org is like the Facebook of the epilepsy community, and lots of celebrities are on the site. Even if you have nothing to do with epilepsy, go to the site to learn something - like never to stick anything in anyone's mouth when they're having a seizure. That's a myth.
The is my partner, but I created Talk About It! and I own the site - it's an exchange of information from one parent to another. You'll never find an ad on there. It's my creation and something I hold so dear.
Everyday Health: What's your advice to parents with a child newly diagnosed with epilepsy?
Greg Grunberg:My two messages are: Don't settle, and get to a specialist. And if that specialist can't get the seizures under control, seek out another specialist. Also, it's going to be okay. You're not alone, don't freak out, and know that there are other people going through the exact same thing.
Everyday Health: You're in Washington as we're talking. What are you doing in D.C.?
Greg Grunberg:I'm here to chair theNational Walk for Epilepsy, which is so exciting. Thousands of people came out last year - more than 10,000 - people who are directly affected by epilepsy and their families and friends. We walk to say that we are not going to let this stop us. I'm also speaking to Congress. [Grunberg addressed Congress on March 25, 2010.]
Everyday Health: At 13, does Jake ever say, 'Dad, can we not talk about it?'
Greg Grunberg:He actually loves it. It empowers him. But look,I'mtalking with you; he's not. I'm very careful. He's going to sit next to me in Congress, but he's not going to speak. It's a tricky thing, but we have to do this. All this time, no one has been the face of epilepsy, and my wife and I are happy to do it. We're proud to do it.
Everyday Health: What's one thing everyone should know about epilepsy?
Greg Grunberg:Don't be scared of epilepsy. As Jack Black says on the Web site, 'Let's talk about epilepsy the same way we talk about cheeseburgers.' It should be part of the vernacular, and we shouldn't be scared of it.
Video: Felicity: Docuventary Season 3 with Greg Grunberg
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