Treating epilepsy can be complicated. There are many kinds of seizures, with numerous medications and other types of treatments to consider. Children can respond very differently to the same treatment. Having epilepsy often affects not only children's health, but their social lives, how they do at school and their overall happiness.
For many families, the best way to address or handle these challenges is with a "team" approach. Like any successful team, each member has a different role or position to play, but everyone works together to accomplish the same goal — for your child to live the most happy and healthy life possible.
As the manager of your child's medical team, your job is to recruit the best people you can find and make sure they are doing everything they can to help your child. You also need to support them, by providing them with information on how your child is doing, making sure your child gets the right amounts of medicine, sleep and anything else that is recommended, and asking questions when you are confused or concerned.
Who Is On Your Team?
Depending upon how epilepsy is affecting your child, your health care coverage and what is available in your community, there are different providers who may be part of your child's medical team. These include:
- Pediatrician — this doctor specializes in treating children and is usually the first person you will see. Some insurance plans call a pediatrician the "primary care physician." Even if it is recommended that your child see a doctor who specializes in epilepsy or brain disorders, it is important to keep your pediatrician involved in your child's care.
- Neurologist — a doctor who specializes in treating brain disorders, including epilepsy. A pediatric neurologist specializes in children's brain disorders.
- Epileptologist (Pronounced: Ep-pee-lep-tol-o-gist) — a neurologist who specializes in epilepsy treatment. It is often recommended that a child see an epileptologist when epilepsy is first diagnosed. After that, it is usually only necessary if treatment isn't working or sometimes during a physical change such as puberty or pregnancy.
- Pediatric Nurse —a nurse with special training in treating children.
- Nurse Practitioner — a registered nurse with advanced training in treating many medical conditions.
- Neuropsychologist — a psychologist who specializes in neurobiological causes of brain disorders, such as head injuries, central nervous system infections and strokes. They will evaluate cognitive or learning issues that could affect how a child is doing at school.
- Clinical Psychologist or Psychiatrist — these specialists can help children with mood and learning disorders that are common in children with epilepsy.
Resources to Manage Your Team
- Epileptologist Database — the Epilepsy Foundation has partnered with the American Epilepsy Society on a database to help you find epilepsy specialists in or near your community.
- Pediatric Neurologist Database — listings of pediatric neurologists in your state
- Epilepsy Centers — click here to search by state for information on more than 100 facilities around the country that specialize in epilepsy care.
— knowing what kind of seizures your child is having will help your doctor find the best treatment. This sheet lists some of the information that it is helpful to tell your doctor about each seizure, such as whether your child's eyes were open, body was moving, etc.
— this log provides a convenient place to list important information such as the time, date and length of each seizure.
— children often need to change medications. Use this log to keep a permanent record of your child's different medications.
— use this form to plan what you want to talk about with your child's provider at your next appointment and to help you remember important things that you discussed.
Manage and Make the Most of Doctor Visits
The more you know about epilepsy and the more you talk to your doctors about your child's needs, the better the chances are that your "team" will reach its goals — no seizures, no side effects and a full, active life for your child.