Epilepsy is the 4th most common neurological disorder in the United States, and the 2nd most common among children. However, there is no “typical” patient with epilepsy. Children and youth with this diagnosis may differ on the type of seizure they experience, the frequency of their seizures, and the presence of co-existing conditions. In addition, some children and youth who have experienced seizures do not have epilepsy, and instead are reacting to a different underlying cause, such as fever, medication, or certain infections. To reach a diagnosis, BMC physicians will need to collect the patient’s clinical history through interviews with the individual and their family.
Before arriving to your appointment, consider what you recall about your child’s seizure(s). It will be helpful to your child’s physician to remember some of the details. If you are able to bring a video recording of your child’s seizure, this can be invaluable to the diagnostic process. You might also consider filling out this observation tool from the Epilepsy Society.
If you or your child have received a diagnosis of epilepsy, it is understandable to have questions. Here are just a few resources recommended by the BMC staff:
Epilepsy Foundation (National): the mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives
Epilepsy Foundation New England: includes relevant state policies, local events and camps for youth, scholarship opportunities, an advocacy newsletter, and support group contacts
My Seizure Diary: a self-management tool for seizures and epilepsy with a focus on self-monitoring and tracking seizures and other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your care providers
Toward Independent Living and Learning (TILL), Inc.: a nationally recognized organization with the resources to support individuals of all ages with intellectual disabilities, learning differences, mental health disorders, autism spectrum disorders including Asperger's syndrome, physical disabilities, and acquired brain injuries
Federation for children with special needs: provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities