Epilepsy impacts the whole family. As parents, you have to make sure your child living with epilepsy is getting the best possible care. And you also have to make sure their siblings get attention and care too.
We also want to know that you are well and healthy. You have a lot to juggle so take care of yourself.
Remember, you are not alone!
There is a whole community of parents and friends out here who care. Build connections to share experiences and talk about your challenges and what works for your family. Make sure you and your loved ones living with epilepsy are living to your greatest potential. Make sure you talk about your needs with friends, other families, and your family’s health care team.
INT. DAY / NIGHT. DIMLY LIT TUBE STATION PLATFORM.
GREG GRUNBERG enters from the left. Lining the wall of the train platform behind him are numerous posters, including one of Jennifer Garner, with the words "The Promise" -- resembling a movie poster.
Greg Grunberg: Hi. If your child has a medical condition like epilepsy, you need to run as fast as you can to find the best help and the right answers.
The station darkens, shifting focus onto a TV monitor featuring an expert panel interview. Greg Grunberg interviews Michael Smith, M.D., of Rush University Medical Center.
Michael Smith: The first thing you say is, "There's always something else you can try." The point is epilepsy is a very multi-faceted, difficult disease process, and there's many different ways of approaching the problem and there's always something else that you can try. I think that most physicians, a lot of the epileptologists, we all see each other's patients because at the end of the day, the parent wants to be able to look themselves in the mirror and say, "I'm doing absolutely everything I can for my kid." So if you have questions about it, then you need to seek that out just for your own piece of mind and your own mental health.
Greg Grunberg: And you do that at Rush. I know that when Jake came in and every time I talked to you and I'm waiting for you to tell me the results of the test, you present to a room full of people.
Michael: Exactly. The more minds the better to try to understand a difficult problem.
Greg: Okay. What would you say to a parent or what do you say when a parent comes in and says, "My child has epilepsy and I'm scared?"
Michael: I say, "It's normal to be scared." One of the scariest things in the whole world is to watch your child have a seizure cause you think they're dying. As I told you I went through the same thing when my oldest son was three years old. It's a feeling you can't describe to anyone unless you've been there. The important thing is that you understand the angst of the parents. If you don't understand that angst then sometimes you can be put off by how they want their kid better, and I understand completely that you want your kid better cause I've been there and I've personally experienced that. So what you tell the parent is, "We're gonna try everything we can within reason and we're gonna take one step at a time. We're gonna gather more information and we're gonna make a plan."
Greg:Okay. Should parents and should anybody who's dealing with a seizure disorder, should they take notes? Should they write things down? What's the most important information that you can get from a patient when they come in? What do you ask for?
Michael: The first thing is what does the seizure look like? One of the things that's hard to deal with is when your child is having a seizure first of all time expands. You think it's been going on forever so you try to actually -- after the event you try to write down what happened because that can tell us a lot. Does the head turn to the right or the left? What hand goes up? After the seizure is the person weak? Is there anything precipitating it?
Greg: Right. What kind of triggers? What happened before?
TV monitor darkens, and station brightens again, lighting upon Greg.
Greg: If you are the parent of a child who has epilepsy, when those seizures are happening, watch carefully, take mental notes, write them down, because the information that you provide your doctor is invaluable.
Jennifer Garner speaks directly to us from within the poster on the back wall of the station platform.
JenniferGarner: If your child is still having seizures, don't settle.