Diagnosis, treatments, and ways to cope with this complex disorder
Living With Epilepsy
Epilepsy is a devastating diagnosis for any family as it means living with the uncertainty of when a seizure may occur, but by building the right support team and educating yourself and others about epilepsy, it is a diagnosis your whole family can live with.
Proper medical care and therapies are vital to your child’s well-being. “My advice to parents of children with epilepsy is to try to establish a good working relationship with the medical team to achieve the best results,” says Dr. Joshi.
She also adds that parents must learn to properly deal with seizure activity. “It is very important to not panic during a seizure, as this will not help the child,” advises Dr. Joshi. “It is important to remember the first aid steps that your doctor/nurse will have discussed with you. And it is also important to supervise children with epilepsy during some activities such as swimming and biking.”
Especially with passing on information on seizure first aid, parents of a child with epilepsy often become educators for other caregivers in their child’s life. “It is an ongoing effort to educate those around us regarding Adam’s needs and how the seizures and medications affect his day-to-day life,” says Sara Todd. “As parents we are frequently educating others—family, friends, other parents, school nurses and health secretaries, teachers, associates, principals, babysitters, legislators, etc.” She says they not only educate on how to respond when Adam has a seizure and how seizures affect his life, but also on how to keep Adam safe and yet try to give him as much freedom as possible to enjoy being a kid.
Often that education turns into advocating. Grace’s dad Kevin has become an advocate for Grace and other children at her special needs daycare. He has even lobbied at his state capitol on behalf of epilepsy funding.
Grace’s mom Joy says as a parent of a child with epilepsy you also have to be willing to accept help. “It doesn’t mean you are a bad parent. You just can’t do it alone,” she says. And Sara agrees. “We have built a support team for us and for our son and that has been key in helping us do the best we can for Adam.” And that is all any parent could really want.
- The Epilepsy Foundation
- First Aid for Seizures (including a guide for babysitters and caregivers)
- CURE: Citizens United in Research for Epilepsy
- Epilepsy.com: basic information about epilepsy for kids and parents
- The Charlie Foundation: information about the Ketogenic Diet
- Taking Seizures to School: A Story about Epilepsy
- The Facts about Fevers and Febrile Seizures
- Pregnancy & Epilepsy
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