The onset of puberty can lead to more than first dates and acne—it can add a complex social environment to the management of an already complicated illness. But there is hope and help out there. Advocacy groups such as the Epilepsy Foundation offer books, videos, and online sources of advice and counseling for kids trying to navigate their teenage years carrying the extra load of epilepsy.
Most kids with epilepsy get through their teen years alive and well and even manage to grow into healthy adults, says epilepsy counselor Linda LoBue, who works for the Epilepsy Resource Center in Springfield, Illinois. The big-ticket concerns for kids with epilepsy are largely the same as those for other teens, she says.
"The big issues with teens who have epilepsy are dating, sports, driving," says LoBue. "If someone's seizures are active at all, he or she can't drive," LoBue says. "They have to be seizure free."
But lack of wheels can be a real social disadvantage for teens, both in terms of dating and the ability to work, which are both major areas of identity during the teen years, LoBue says. And the temptations of teenage times—alcohol and drugs—are no less real for teens with epilepsy than they are for other teenagers (or for their parents).
A lot of typical teen misbehaviors—staying up late, not getting enough sleep and experimenting with alcohol—are a recipe for increased seizures in kids with epilepsy, warns Southern Illinois University School of Medicine neurology professor Dr. Steve Evans.
"All three of those behaviors can cause an increase in seizures," he says. "Alcohol is really bad news for people with epilepsy. As well as interacting with epilepsy medicines, alcohol can change the electrical activity in the brain," Evans notes. "As people sober up they may begin having seizures."
Keeping late hours and getting too little sleep may also lower the threshold for seizures, Evans says. Giving in to the temptation to use alcohol or drugs may be easier than saying no and explaining why, she says. In addition, kids with epilepsy may use alcohol or drugs as a way of masking their "difference" from other kids or use them as a way of trying to fit in, LoBue says.
Another teen trait, stubbornness, could lead to double trouble for teens with epilepsy, Evans warns. Adolescents often deal with painful realities by simply denying that they exist. If they do that with their epilepsy, they could get into real trouble, he says.
"None of the epilepsy medicines we have now is curative," Evans says. "If a teen stops taking them, the seizures will surely return."
Another area of concern for these teens, their parents and teachers is academic performance. The storms of adolescence, magnified by problems with managing their disease, can hurt schoolwork, LoBue says. "What most concerns us in teens in middle school and high school is the possibility that kids with lesser epileptic symptoms will be missed at school."
Teens that have absence or partial seizures sometimes may appear simply inattentive or unmotivated in school. "The possibility that it is seizure activity that is responsible for their lack of attention can be overlooked, affecting their learning," LoBue warns.
But the teen years for teens with epilepsy and their parents needn't be entirely grim news and late-night worrying, Evans emphasizes. There are also reasons to be optimistic.
"Puberty per se doesn't affect epilepsy much," he says. "In fact, many children who had absence type seizures in their first 10 years of life grow out of them altogether as they grow into teenagers," he adds.
Another bit of good news is that epilepsy medications have improved tremendously in the past few years, according to SIU professor of neurology and pediatrics Dr. Michael Pranzatelli.
"We have really good medicines now," Pranzatelli says. "It's much more common now than it used to be to have epilepsy patients on only one or at most two anti-seizure medications," he says.
The biggest challenges for teens with epilepsy may be learning to grow into self-sufficient adults despite their illness, experts say. And that's largely a function of how the child is raised, Pranzatelli says.
"Some kids with epilepsy seem to grow up sooner and manage their medications and really keep on top of it," he says. "Others rely on their parents and miss out on doses."
Pranzatelli's advice to parents: "Start training the child to be self-reliant and start addressing early some of the obstacles that they'll run into as adults," he says. "That way, those obstacles won't take them by surprise when they become adults."
Topic Editor:Gregory L. Holmes, M.D.
Last Reviewed: 10/23/06
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Many kids with epilepsy worry that their partner will want to break up with them because of their epilepsy; but if you have a positive attitude when you explain it to the other person, they may be less likely to be frightened off.