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.
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.
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!
- Seizure Medications and Suicidality
- Seizure Medications and Bone Density: Many seizure medications seem to affect Vitamin D, which is important to maintaining healthy bone density. It makes sense in most patients with epilepsy to check Vitamin D levels via a blood test, and many patients require a Vitamin D supplement.
- Seizure Medications and Routine Blood Work
- Intranasal Midazolam
- Hormones and epilepsy
- Vagus Nerve Stimulator
- Epilepsy Surgery: When medication cannot control seizures, surgery may be an option for some patients.
- Dietary Therapies:
- Cannabanoids: Physicians at Kennedy Krieger are not able to prescribe marijuana-derived treatments for epilepsy, apart from research studies. Many parents have heard different things about these potential new treatments. This information is from epilepsy.com and has not been reviewed by the Kennedy Krieger Pharmacy and Therapeutics Committee.
- Reducing Triggers: Parents often can figure out that certain factors make it more likely for their child to have a seizure, such as a poor night of sleep, or a fever, or stress. We also know parents who have found consistently that environmental temperature or constipation leads to seizures. Sometimes an important step is to minimize those triggers.
- Clinical Trials
- Seizure and Epilepsy Medicines | Epilepsy.com
- Epilepsy and Bone Health | Epilepsy.com
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.
- National Epilepsy Foundation
- Abilities Network
- ILAE
- Resource Finder at Kennedy Krieger helps families link up with the ever-changing world of resources in the Maryland area.
- The Center for Developmental Behavioral Health at Kennedy Krieger has extensive experience helping children with a wide range of mood and behavioral issues related to neurological conditions.
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.
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. The Epilepsy Foundation also has education programs for school nurses.
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.
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.
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
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.
- Maryland MVA: Information on how individuals with epilepsy are evaluated by the MVA for driving. The process differs from state to state.
- Driving evaluations: Some occupational therapists have specific expertise in evaluations related to driver safety. This list has been collected by the Maryland MVA.
- Alternative forms of transportation:
- Home Safety (including Bathing, Cooking)
- Helmets: Some individuals with epilepsy fall often and may injure their heads. Helmets may be helpful to these patients. They can be fitted at the Occupational Therapy Clinic at Kennedy Krieger.
- Alcohol
- Seizure Response Dogs:
- Flickering Lights
- Seizure First Aid and Safety | Epilepsy.com
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.
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.
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.
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.
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.
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.
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.
Epilepsy.com | Parents and Caregivers
Epilepsy.com | Parents Helping Parents
Camp Great Rock: Run through Children’s National, but children don’t need to be a patient of CNMC to attend.
Caring for Someone with Epilepsy: Taking Care of Yourself
Caring for Families and Caregivers of People With Epilepsy
Seizure Tracker: This app allows caregivers or patients to track seizures and share that information with their providers.
Tip Sheets for Caregivers of Individuals with Special Health Care Needs
Parent to Parent: Our mission is to support a national network of Parent to Parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs. Each family’s journey has value and can offer hope and inspiration to others. Peer support fosters mutual growth and resilience in families and among programs. Evidence-based practices ensure consistency and quality throughout the network. Leadership, integrity, and partnership build capacity and sustainability.
Parent to Parent Maryland: The Arc Maryland statewide Parent to Parent (P2P) program is a free and confidential service designed to connect parents and caregivers of children with special needs (age birth to 21) with trained volunteer mentors who have experience raising children with disabilities. Parenting a child with autism, cerebral palsy, intellectual disabilities, physical disabilities, complex medical needs, or genetic and other disorders can be an overwhelming and potentially isolating experience. Parents work to become experts in their child’s disability, learn a new vocabulary of medical and therapeutic terms, and navigate a labyrinth of services, therapies, insurance issues, and public systems to access to the best treatments and school settings possible.
The Parents Place-Maryland: Our mission is to empower families as advocates and partners in improving education and health outcomes for children with disabilities and special healthcare needs with a commitment to diversity and equity. We help families obtain education and health care services for their children with disabilities; work to improve education and health care for all children; train and inform parents and professionals on a variety of topics; and connect children with disabilities to community resources that address their needs.
Mom2Mom: The Mom2Mom helpline connects moms of special needs children and adults with moms of a similar circumstance who are specially trained in peer counseling and crisis support, making them uniquely qualified to offer relevant and realistic guidance, support. - We are offering free online virtual support groups via Zoom. We invite all attendees to use this space to talk with one another about your experiences and challenges, and anything else that you would to talk about with others who will understand. Our goal is to create a supportive environment where you can connect, share and be heard.
Caregivers of Children with Special Needs (under 21).
- When: 1ST Wednesday of the month @ 7pm ET
- Where: Via Zoom
- How to Register: Register online via the “Support Groups” tab and a Zoom link will be emailed to you directly.
Complex Child: Your source for information on children who are medically complex or have disabilities! Complex Child is a monthly online magazine written by parents of children with healthcare needs and disabilities.
Family Voices: Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children.
The Caregiver Space: We’re a bunch of caregivers from all walks of life, coming together to support each other. We provide a safe and open space—at no cost—where you can be real about what it’s likes to care for someone dealing with a serious disability or illness. Our community of caregivers is a place to ask questions, share experiences, get real answers, or just get things off your chest. Please do not use this space as a substitute for professional advice. We’re your friends, not your doctor.
Caregiver Action Network (CAN): Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.