If your child has epilepsy, you likely have many questions. We have collected an assortment of information that may be helpful for self-education.
At Kennedy Krieger, we take care of a vast array of children and adults who have seizures, and every individual is different. Approaches that may help one person with epilepsy may harm another. Please discuss any information with your physician before acting on it.
Navigating life with epilepsy can seem daunting. These resources provide basic information about epilepsy for those with a new diagnosis, including details about the different types of epilepsy and tips for the parents of children who have just experienced their first seizure.
Epilepsy Foundation
The Epilepsy Foundation website features a broad range of information for those living with epilepsy. Many of the resources on this page can be found on the Epilepsy Foundation site.
Causes of Epilepsy
While in some cases the cause of a child's epilepsy may be very clear, there are many instances where it's not.
Kennedy Krieger's Neurogenetics Clinic specializes in finding genetics causes for brain disorders. This information can help parents who want to understand the cause of their child's neurological issues, plan future pregnancies, know if other medical problems should be screened for and better understand what to expect in the future.
The mainstay of therapies against seizures is medications. Seizure medications can cause different types of side effects; medication therapy involves balancing seizure reduction with limited side effects. Our goal is always to try to get to no seizures and no side effects! In some cases, other therapies can also be useful. The below resources provide information about medications and non-medication therapies for treating and maintaining epilepsy symptoms.
Seizure Medications and Suicidality
Suicidal ideation or thoughts of suicide are a problem for some people with epilepsy. Learn about what the risks and warning signs are.
Blood Testing
Blood levels are often checked before starting an antiepileptic drug. Discover what blood tests measure and why they're so important for those living with epilepsy.
Vagus Nerve Stimulation
Vagus nerve stimulation prevents seizures by sending pulses of electrical energy to the brain via the vagus nerve. Find out more about this epilepsy treatment device by visiting the link above.
Epilepsy Surgery
When medication cannot control seizures, surgery may be an option.
Dietary Therapies
Both the Epilepsy Foundation and Johns Hopkins Medicine provide helpful information about various types of dietary therapy that can help some epilepsy patients achieve seizure control.
Cannabanoids
Kennedy Krieger physicians are unable prescribe marijuana-derived treatments for epilepsy, apart from research studies. This information from the Epilepsy Foundation provides insight into these potential new treatments. Please note: this content has not been reviewed by the Kennedy Krieger Pharmacy and Therapeutics Committee.
Reducing Triggers
For many of those living with epilepsy, certain factors can trigger a seizure, such as a poor night of sleep, or a fever, or stress. Sometimes an important step in treating seizures is minimizing those triggers. Learn more about how to do so with this information.
Clinical Trials
Visit the Epilepsy Foundation's Clinical Trials Portal to learn more about current trials and observational studies that you or your child may be able to participate in.
Support groups for people with epilepsy, or family members of people with epilepsy, provide an opportunity to engage with others in a safe and supportive environment.
Epilepsy and Friends
Explaining epilepsy to your child can be challenging. The Medikidz comic book series, created by Advancing Epilepsy Care, uses animated superheroes to explain epilepsy to children.
The Resource Finder at Kennedy Krieger
A compilation of provider lists, support and advocacy groups, and an assortment of other resources for those living with developmental disabilities and disorders.
International League Against Epilepsy
This website features helpful information for persons with epilepsy and their caregivers, including mental health care resources, recipes, seizure information and more.
Abilities Network
This Maryland-based organization helps individuals with disabilities achieve their personal goals and reach their maximum potential.
National Epilepsy Foundation
The National Epilepsy Foundation website features an abundance of resources for those living with epilepsy and their families, including information about symptoms, treatment options, specialists and exercise routines.
Center for Developmental Behavioral Health
This Institute program has extensive experience helping children with a wide range of mood and behavioral issues related to neurological conditions.
Seizures can take on many different forms and affect different epilepsy patients in varying ways. The resources below provide important information about what to do in the event of a seizure.
Seizure First-Aid
Epilepsy is quite common, and everyone should know how to provide first aid to someone having a seizure. Here are some resources that explain what to do in case of a generalized tonic-clonic seizure (the most severe type):
Seizure Action Plan
Some children with epilepsy, particularly those who have long seizures (more than 5 minutes) or clusters of seizures, require special interventions, such as calling 911, a trip to the emergency room or medications given during a seizure/cluster to stop it. Because children may multiple caregivers at home, at school, at camp, or in other activities, it often makes sense to have a written-out plan for when a seizure occurs. Here are some different forms:
Tracking Seizures - SeizureTracker
One of the most important pieces of information neurologists use to optimize anti-seizure therapy is to determine how seizure medication has affected the frequency of seizures your child is having. Depending on how often your child has seizures, it can be difficult to track them, but good information is still critical to your doctor making the best possible adjustments of seizure treatments.
To help with this, the family of a child with epilepsy created SeizureTracker, an online tool for tracking seizures.
Most students with epilepsy can participate in all school activities. Make sure that all adults who supervise your child know of their diagnosis and are comfortable with caring for a student with epilepsy.
- The Abilities Network
The Abilities Network is well-known for presenting in schools to answer staff and student questions about epilepsy.
- Elementary and Secondary Education and Federal Law
It is important to familiarize yourself with legal rights related to education. The above document highlights federal laws and how they pertain to students with epilepsy.
- Education Program for School Nurses
Offered by the Epilepsy Foundation, this program is designed to provide school nurses with information, strategies and resources that will enable them to better manage a student with epilepsy.
- Learning and Epilepsy
Many children with epilepsy experience developmental issues prior to their first seizure, while others appear to have no developmental delays. Event in children who are doing well in school, very subtle attention, memory and learning problems are surprisingly common.
The Center for Development and Learning can assess these problems and provide treatment suggestions, while the Neuropsychology Clinic offers specialists in epilepsy neuropsychology who can also assist with the diagnosis and treatment of these issues.
A scary fact—but one that parents want to know about—is that children and adults with epilepsy have an increased risk of sudden and unexpected death. Certain steps can be taken to make this risk as small as possible, and there are many resources available to families affected by SUDEP.
- SUDEP Action
SUDEP Action focuses their efforts on preventing deaths and supporting bereaved families affected by SUDEP.
- SUDEP Aware
SUDEP Aware strives to reduce death in epilepsy through supporting research and raising awareness of SUDEP.
- Nighttime Monitors
Some research suggests that nighttime monitors can decrease the risk of SUDEP in patients. The Danny Did Foundation collects information about nighttime monitors and can provide guidance on what the best fit for your child is.