Parents want to be actively involved with their child’s care. If your child has epilepsy, you likely have many questions.

Your physician will be your primary resource for medical advice, and other parents often have incredibly valuable information to share. We have tried to collect some additional information that may be helpful for self-education. Note that we cannot vouch for the accuracy of all of the information—for example, it is possible that the authors have changed the information since we first collected the link. You should discuss any information with your physician before acting on it. At Kennedy Krieger Institute, 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.

Basic Epilepsy Resources

Parents who have children with epilepsy—and individuals with epilepsy themselves—often need basic resources to get started. These resources include information on the many different types of epilepsy.

  • First Seizure Brochure: The parent of a child with epilepsy wrote this brochure, in conjunction with Kennedy Krieger and Johns Hopkins neurologists, for other parents whose children have just had their first seizure. 
  • Epilepsy.com: The Epilepsy Foundation’s educational website; it covers a broad range of information
  • Seizures and Epilepsy in Childhood: A Guide: This book, written by Johns Hopkins Hospital pediatric epilepsy specialists, is a classic. 

Medications and Non-Medication Therapies

The mainstay of therapies against seizures is medications. In some cases, other therapies are useful. Seizure medications can cause different types of side effects, and so medication therapy involves balancing seizure reduction with limiting side effects. Our goal is always to try to get to no seizures and no side effects!

Family Groups and Community Resources

Support groups, such as the Epilepsy Foundation, can provide important information, financial support (in rare, special cases) and services such as explaining epilepsy to teachers and school staff.

Epilepsy and Friends

Parents may want help to explain epilepsy to their child’s friends and the friends’ parents. Parent groups are critical here, and there are other resources available. For example, Medikidz comics have been developed to help children understand epilepsy.

Epilepsy and the School System

Any given school may be more or less comfortable and familiar with the care of a student with epilepsy. The Abilities Network has a long history of making presentations in schools to answer staff and student questions about epilepsy. Parents should also familiarize themselves with their legal rights related education. The Epilepsy Foundation also has education programs for school nurses.

Tracking Seizures

One of the most important pieces of information neurologists use to optimize anti-seizure therapy for your child is to ask how the seizures have increased or decreased in response to changing the dose or type of seizure medication. Depending on how often your child has seizures, it can be hard to track the seizures exactly—but good information is still critical to your doctor being able to make the best possible adjustments of seizure treatments. Some parents prefer to track seizures via paper, and others prefer to log the information online. The family of a child with epilepsy created SeizureTracker, an online tool for tracking number of seizures. 

Seizure Action Plans:

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 care-givers 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:

SUDEP: Sudden, Unexpected Death in Children with Epilepsy

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.

  • SUDEP.org
  • SUDEPaware.org
  • SUDEP guidelines
  • Nighttime Monitors: Some research suggests that nighttime monitors can decrease the risk of SUDEP in patients who have nighttime seizures. Although we cannot recommend any individual product (because most have not been studied scientifically or approved by the Food and Drug and Administration), here are some resources. Danny Did is a foundation that collects information about nighttime monitors for people with epilepsy. www.dannydid.org

Activities and Safety in Epilepsy

Parents and medical professionals alike want our kids who have epilepsy to enjoy all of the same activities as any other child. However, some activities can simply be more dangerous for individuals with epilepsy. Bathing/swimming and driving are examples, but the actual activities that are associated with increased risk are specific to the individual. In many cases, common sense is the most effective guide to assessing the risk of any particular activity in your child.

EEGs

The EEG records the brain’s electrical activity. Recall that seizures result from abnormal electrical activity in the brain, so the EEG is an important test in individuals with epilepsy.

  • Kennedy Krieger EEG Lab Page: Parents often want to know how to prepare their child for an EEG. Our lab page has extensive resources describing what to expect, and we even have a social story for children
  • Epilepsy Monitoring Unit: Sometimes it helps patients to have an EEG that lasts several day, while they are admitted to the hospital. 

MRIs

Children with focal epilepsy (the most common type: seizures start in one part of the brain) often require MRIs to see whether there is a spot on the brain that could be the cause of the seizures. Many children who get MRIs cannot hold still for the required 30-60 minutes and need sedation or anesthesia. Learn about the process for preparing for a MRI at Johns Hopkins.

Psychosocial Resources in Epilepsy

Mood, anxiety and behavior problems are very common in individuals with epilepsy. Additionally, many families would benefit from assistance with learning about resources available to families who have children with epilepsy, and with navigating educational, legal and financial systems. Kennedy Krieger has epilepsy-focused clinics to help with mood and behavior problems, as well as Resource Finder to offer information regarding community services.

Learning and Epilepsy

Many of the children we see were known to have developmental issues before they had their first seizure. In other cases, development appears normal. Even in children who are doing well in school, very subtle attention, memory and learning problems are surprisingly common. These problems can be assessed, and treatments can be suggested in the Center for Development and Learning and our Neuropsychology Clinic, which has specialists in epilepsy neuropsychology.

Sleep and Epilepsy

There is a complex relationship between epilepsy and sleep. Lack of sleep or a change in the sleep schedule can trigger seizures. Also, people with epilepsy may be prone to different types of sleep problems. Seizure medications can also worsen sleep problems. And parents of children who have epilepsy also often have problems sleeping themselves.

Causes of Epilepsy

In some cases, the cause of a child’s epilepsy (and other developmental disabilities, when present) is very clear, such as traumatic brain injury or a decrease of oxygen to the brain. However, in many cases, the cause may not be clear. The field of Genetics is providing new answers every day. Kennedy Krieger’s Neurology and Neurogenetics Clinic specializes in finding genetic causes for brain disorders, including epilepsy. Although this information does not usually result in new treatments, the information can be helpful to 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.  

Transitional Planning in Older Children and Young Adults with Epilepsy

As children with epilepsy get older, plans need to be made not only to transition from a pediatric neurologist to an adult neurologist, but from the school system to college or work or a day program, depending on the abilities of the child and his/her challenges, and on the desires of the individual and his/her family. Transition planning should start in early adolescence.