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ANSWERS FOR PARENTS



As a child enters adolescence and the teen years, unique issues arise. This is true for any family, and especially true for families dealing with a medical condition. Kids start developing their own identity, and may try on a few different ones while they are experimenting. Kids want to gain independence from their parents and seek their own paths. While this growth is normal and a goal of parenting, it is even more difficult when parents have dedicated themselves to managing the care and treatments for their child with a medical condition.

Though all kids are different, a child with epilepsy has a unique set of circumstances. Epilepsy is not a medical concern that is widely understood. The burden therefore falls on the child and his or her family to educate the world around them on how to help. When a child is young, his parents provide this protection. As a teenager, she learns to create her own safety net in order to participate in life.

Seizures are dangerous. They temporarily remove a person’s ability to react in a potentially dangerous situation… crossing the street, driving a car, playing a contact sport. While most kids are managed well by their medication and are experiencing a seizure-free life, they need to understand the importance of compliance. For those kids who are not managed well, and may have tried more than two pharmaceutical regimens with no success, the Comprehensive Epilepsy Center can offer help. Some kids may be candidates for a surgical option that can cure their seizures.

  • 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 epileptolgist – 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 out of your sight can be heart-wrenching experience. The trick is to ensure that your child’s safety net is in place. This is only possible, however, when your child is ready to disclose that he or she has epilepsy. When children are young, they 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 him start to gain the confidence he needs. Begin with confiding in one friend. Educate that friend on what to do. With one friend in place, the world starts to open up, and you have permission to instruct the adults in your child’s world.

  • How do I stress the dangers of seizures to a teenager?


    We all remember that teenagers are invincible, indestructible and that they are bombarded with peer pressure. Your teen needs to understand the importance of compliance with his/her medications before all else. One tip is to begin the trust early by providing your child with the medications to administer himself. You can confirm he 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?


    It is true that epilepsy does not have the same level of awareness as other medical disorders in schools. 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 CDC and the Epilepsy Foundation, we have assembled a kit for you to use at your school to help educate teachers and raise public awareness. And this can be done without singling your child out and causing even more embarrassment.

Join our “Parents Care” group

  • “Parents Care” Groups are designed for the parents of adolescents and teens with epilepsy. Part education, part support, part advocacy, Parents Care groups address the concerns unique to these families. Held quarterly, group participants will have the opportunity to speak with an epileptologist; hear psychological insight and parenting tips from experts in the field of understanding teens; and share experiences with other families. Help will also be available for planning awareness campaigns in your schools. To receive updates on time and location of the next Parents Care group, send your e-mail address to epilepsy@neuro.columbia.edu.

eCommunities Interest Groups:

  • Living Well With Epilepsy - A special support group for adults living with epilepsy.

  • Parents Helping Parents - A group for parents and guardians of children with epilepsy.

  • Genetics & Heredity - A group dedicated to the special needs of those who have conditions that may have a genetic or hereditary basis.

  • Advocacy - This group discusses various advocacy issues, including local, state and federal efforts.

  • Women & Epilepsy - Women affected by epilepsy can meet supporting friends online.

  • Men & Epilepsy- Men affected by epilepsy can meet supporting friends online.

  • Teen Group - A place just for teens. (The Teen Group is funded by an unrestricted grant from MedPointe Pharmaceuticals.)

  • Epilepsy at Work - A place to discuss workplace issues.

  • Help Forum - A central location to address questions and issues related to forum operation or Foundation inquiries.

  • Friends, Family, & Loved Ones - Support for those who give support.

  • Adults & Epilepsy - A group just for adults to discuss anything related to "adult" issues: work, play, love and beyond.

  • SUDEP (Sudden Unexplained Death in Epilepsy) - A group for education, support and information sharing about this serious subject.

  • The Lounge - An informal place to hang out and get to know other members.

  • Poetry & Prose - A forum to encourage individual creative expression.

  • Entitled2Respect - Straight talk for teens about acceptance and Epilepsy.

  • KidsClub - Scoop, our friendly puppy, invites kids of all ages to KidsClub. Come out to the Playground! Visit the Funshop! Read some stories, play games with the puppy!

Copyright © 2008 Comprehensive Epilepsy Center | Department of Neurology | Columbia University | © Morgan Stanley Children's Hospital of NewYork-Presbyterian
Tel. 212.305.1742 || Neurological Institute, 710 West 168th Street, 7th Floor, New York, NY 10032
Last updated: April 2, 2012 | Sitemap | Comments