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Specialty Care Center for Adolescents and Teens with Epilepsy
Frequently Asked Questions
Answers for Kids by Kids
What causes epilepsy?
Calvin: Sometimes it can just happen, maybe for some reason, it can just happen, or sometimes maybe if you can get really injured, a head injury, and it can damage your brain. It can start epilepsy.
Jennifer: A lot of things cause a seizure...like it could be hormonal; it could be a physical head injury; it could be strobe lights; it could just be a lot of things.
Can you catch epilepsy from someone who has it?Calvin: No. It's not like a spread disease like coughing or germs. If it was like that then you could catch it, but its in your brain, it controls your brain, so any way it can't just like pop out of your head and storm into someone else's brain, no way can that happen, it just happens to one person.
Maurice: Seizures aren't contagious. They are like lighting in the brain.
What is a seizure?Maurice: Seizures are a trigger, like lightning in the brain and they function like a load of electricity and when it happens it's like a thunderstorm and it ruins the electricity in the brain and it causes jerky movements. Now there are definitely different types of seizures: Grand mal - one of the deadliest ones because I experienced them with my sister, they turn blue, are jerking constantly. It's kind of scary because you never know. Sometimes they pass out and wind up in comas. Complex seizures are not as bad, but they trigger damage in the brain. They are like a blank stare -- you're not there -- kind of like daydreaming. There are many seizures. It's dangerous.
Jennifer: Seizures can be very different - like the grand mal seizures when you actually pass out to the floor and start twitching. It could be just partial seizures where your head or a section of your body just stats flailing out; or it can just be like an absence seizure where you stare off into space and the you come back like two seconds later.
How has epilepsy impacted your life?Jennifer: It changed the way I had to live my life when I was first diagnosed. When I was first diagnosed I was 12. I was finishing up 7th grade and it was the end of the school year so it didn't really matter. Eighth grade year I was only really worried about school and dance and how everything was going to be affected by epilepsy. I worked very heard at dance and got to be a better dancer -- and I got straight A's -- and that worked.
Hannah: I feel very stressed all the time...like what if this can happen, what if that can happen. And you're never really sure, but on the medication I feel pretty safe. You have to calm yourself down and breathe, and then it all goes away. But anxiety goes with it too.
Have you ever had a seizure at school?Jennifer: Yes, many. I went to my math mid-term. Did like half of the multiple choice and I looked out the window on the side of the room and I went into a seizure. My teacher looked at me and she said "Jen, stop daydreaming." And I didn't get out of the seizure. My friend looked over at me and she's like "Jen, Jen" and she snapped her fingers and clapped and I'm like "What? What happened?" "You're in a midterm and we have like 45 minutes left," and I'm like "Oh God." I tried to finish as much as I could. I didn't finish. I ended up failing the midterm and my teacher calls the house the next week and says "Jen failed her midterm. I'm not going to give her a make-up." My Mom ended up calling our Vice Principal and saying, "I want my daughter out of this class because this lady does not understand what's going on with my daughter."
How will you handle epilepsy when you go away to college?Jennifer: When I go away for the rest of the college years, I'll have everything with me hopefully. I'll try to rent a dorm, but I don't know how that will work out. I'll still try to take care of myself. I've been taking care of myself with the meds since I was 13. I know how to control my meds. I know how to do all of that. I know how to work everything. It's really easy of me to do all of that by myself.
Should you tell people you have epilepsy?Kayla: He's a good brother because he watches out for epilepsy and he watches out for me -- to be safe and to not have anything dangerous and help out at school -- and he also is careful for me because he don't want nothing to happen to me.
Jennifer: Our nurses don't really know what's going on. They think it's brand new. They don't have kids who are open about it. I'm really the only one. There are kids in our school who are epileptic, but I'm really the only one who will talk about it.
Hannah: It's not something that someone should be isolated about. You can be open about it. There's always hope. There's always medicine. You just have to keep going. Don't give up or anything. It worked for me. I feel comfortable with it.
Answers for Parents by Professionals
When should I seek the specialty care of an epileptologist?If your child has tried two pharmaceutical regimens with no success, you should seek the care of an epileptologist -- a neurologist specializing in the care and treatment of epilepsy.
How do I let my child go on an overnight field trip, to a slumber party, to camp, to college?Letting a child who has epilepsy out of your sight can be a heart-wrenching experience. It is important to ensure that there a safety net is in place. This is only possible when your child is ready to disclose that he or she has epilepsy. Young children are embarrassed to tell anyone for fear of being ostracized. This may result, however, in the child isolating himself. As a parent, you can help your child start to gain the confidence about sharing information about epilepsy. You can recommend that he or she begin by confiding in one friend, and educating that friend on what to do. With one friend in place, the world starts to open up, and you then have permission to instruct the adults in your child's world.
How do I stress the dangers of seizures to a teenager?Your teenager needs to understand the importance of compliance with his or her medications. One suggestion to help accomplish this is to begin early on providing your child with the medications to take on his or her own. You can confirm he or she is taking the medications, but you will be able to wean yourself away. One family had to pay their teen $1 every time the parents asked "Do you take your meds?"
How can I help raise awareness about epilepsy?In schools, epilepsy does not have the same level of awareness as other medical disorders. One parent noted that "everyone knows about peanut allergies, but no one knows about seizures." The burden falls on the child and parents to help educate the people in your child's world. In conjunction with the Centers for Disease Control and the Epilepsy Foundation, we have assembled a kit that can be used in the schools to help educate teachers and raise public awareness. And this can be done without singling your child out and causing even more embarrassment.
What should I tell the school and still protect my child's privacy?Protecting your child's privacy is an important goal, unless it impacts his or her safety. Our kit contains tools to help parents provide information for teachers and administrators on what to do for seizure disorders.
What sources of information about epilepsy would you recommend?Following is a list of Web resources we find helpful for parents:
American Epilepsy Society - http://aesnet.org/The Epilepsy Foundation of America - http://www.epilepsyfoundation.org/
The Epilepsy Society of Southern New York - http://epiinfo.org/
Epilepsy.com - http://www.epilepsy.com/ WebMD - http://webmd.com/
Epilepsy Action - http://epilepsy.org.uk/
Antiepilepsy Drug Pregnancy Registry - http://aedpregnancyregistry.org/
Americans with Disabilities Act - http://www.usdoj.gov/crt/ada/adahom1.htm
The Epilepsy Link Page - http://www.disabilitygrapevine.com/Epileps.html
Epilepsy Foundation of Victoria - http://epilepsy.org.uk/ The Anita Kaufmann Foundation -http://www.theanitakaufmannfoundation.org/
The Dana Alliance for Brain Initiatives - http://www.dana.org/about/dabi/
