Authors: Krista Grande, MD; Nan Lin, MD Reviewed: July 2021 Epilepsy is the tendency to have seizures that have no immediate cause. A seizure is uncontrolled, abnormal electrical activity of the brain that may cause changes in awareness, movement, or behavior. A seizure can be provoked or unprovoked. A provoked seizure has an acute, known cause. Fever is the most common cause of provoked seizures in young children. Provoked seizures can also be caused by brain infection, stroke, and low blood sugar. Often, a clear cause of the seizure cannot be found. It is then called unprovoked seizure. About 1% to 2% of children have epilepsy in the United States. An epilepsy diagnosis is made if: Less commonly, epilepsy may be diagnosed after only one unprovoked seizure. This can happen if testing shows brain abnormalities that put the child at risk for more seizures. Most children who have a single unprovoked seizure do not go on to develop epilepsy. About 30% to 40% of children who have one unprovoked seizure have a second seizure. Most recurrences take place in the first two years after a first seizure. Half of recurrences take place within six months. Once a child has two unprovoked seizures, the risk of having a third seizure is around 70% to 80%. An anti-seizure medication is typically then recommended. Epilepsy has a wide spectrum of severity. Some people may have only a few seizures in their lifetime. Others may have multiple seizures per day. Generally, children with epilepsy can still attend school and maintain daily life activities. Seizures can often be successfully treated with anti-seizure medications. For some children, seizures can be controlled with one anti-seizure medication. Other children need more than one anti-seizure medication. It is difficult to know in advance exactly how a child will respond to an anti-seizure medication. Epilepsy may not be a life-long condition. In children whose seizures can be controlled with one anti-seizure medication, there is a fairly good chance that the child will outgrow epilepsy. Different types of seizures reflect the different parts of the brain in which a seizure begins. Categorizing seizures by type can help doctors determine which medication will be most effective. Generalized seizures affect the whole brain from the time the seizure begins. They include the following types: Look for unresponsiveness, with whole body stiffening, jerking, and shaking. Sometimes this includes tongue biting or bladder or bowel accidents. Look for sustained, rhythmic jerking. Look for sudden stiffening of muscles. This may cause the patient to fall. It usually lasts several seconds, but definitely under a minute. Look for brief muscle jerks, such as of arms or legs. Lasts for a fraction of a second. Look for sudden loss of muscle tone (going limp). This often causes falls. Often lasts one second or less. Look for sudden bending and/or extension of the limbs or trunk. Typically lasts one second or less. The spasms tend to occur in clusters. This may be a focal or generalized seizure. There are two types of absence seizures. Focal seizures start in one area of the brain. They can evolve to include the whole brain. They include the following types: These were previously known as complex partial seizures. Children with this type are not fully aware during the seizure. The seizure may include either motor or non-motor signs at onset. These were previously called simple partial seizures. They are similar to focal with impaired awareness except patients are aware during them. They may include either motor or non-motor signs at onset. Look for sudden bending and/or extension movements of the limbs or trunk lasting 1 or 2 seconds. This may be a focal or generalized seizure. It typically occurs in children less than 1 year of age. Disorders That Mimic Seizures Children may have events that look like seizures but are not. These events are treated differently than seizures. Therefore, it is important to distinguish between seizures and non-seizures. The following are not seizures, but can look like them. It is very important to have the primary eyewitness of the seizure describe the events to a physician. A video of the event is also very helpful. Consists of losing consciousness from temporary insufficient blood flow to the brain. Not typically harmful. Young children, when in pain or upset, may hold their breath. This can cause them to turn blue or pale. It can cause fainting. Learn more about breath-holding spells. Includes sleepwalking and night terrors. Stereotypies involve making repetitive movements or sounds. Common examples include body-rocking and hand or arm flapping. Migraines are severe headaches. These are stress-induced events that look like seizures but are not caused by abnormal electrical activity in the brain. Sometimes, these events can be triggered by stress or abuse. Stress and abuse should therefore be evaluated in appropriate circumstances. Tics are repetitive movements or sounds that a person has the urge to do. Tantrums and other behaviors can look like seizures. Daydreaming can look like a loss of awareness. Most of the time, the cause of epilepsy is unknown. However, if uncovered, the cause may offer information about best treatment and prognosis. In about 10% to 20% of cases, differences in the brain’s structure may be causing epilepsy. These can include differences in how the brain formed during pregnancy. They can also include past brain injury due to stroke, infection, or very severe head trauma. In rare cases, epilepsy can be caused by a brain tumor. These differences can be seen in pictures of the brain taken with magnetic resonance imaging, or MRI. Sometimes, epilepsy is caused by a genetic disorder. Genetic testing (usually via a blood or saliva test) may detect this. Epilepsy is diagnosed through a careful patient history. A neurologist will try to get a detailed account of any seizures from primary eyewitnesses and from the child who experienced it. Videos of the event can also be helpful. The neurologist may ask questions about: EEG An EEG, or electroencephalogram, measures electrical activity in the brain. It can help doctors learn more about a child’s brain wave activity. You can expect EEGs to: Sometimes, it is uncertain whether an event is a seizure. A longer EEG that can record the event can help determine if it is a seizure. EEGs are usually done in a hospital, but sometimes longer ones can be done at home. At times, in hospital long term continuous video EEG monitoring may be necessary. It is needed for seizure or spell classification and to capture the episode of concern on EEG. An EEG can also provide useful information about the background electrical activity of the brain. One thing that the neurologist interpreting the EEG will look for are epileptiform discharges. These are abnormal electrical discharges in the brain. They show areas of “irritability” in the brain. These areas are more likely to produce seizures. These discharges are not themselves seizures. An EEG is also useful for evaluating seizure type. Note that a normal EEG does not rule out seizures. Nor does an abnormal EEG mean a child is having seizures. A neurologist must look at EEG results in the context of a child’s clinical history. MRI Once epilepsy is diagnosed, an MRI, or magnetic resonance image, may be used to look for any structural causes of seizures. If a contributing structural cause is found, a child may be at higher risk for more seizures. A neurologist will decide if and when an MRI is needed. Once epilepsy is diagnosed, it is usually treated with daily anti-seizure medication. These medications can prevent further seizures. There are many important reasons to treat seizures, including: Longer seizures especially can harm the brain. SUDEP stands for Sudden Unexpected Death in Epilepsy Patients. It is the most common epilepsy-related cause of death. It refers to a person with epilepsy who dies unexpectedly, and with no clear reason for the death. Scientists and researchers are still learning about its causes. There are over 30 different anti-seizure medications to choose from. Some work better for certain types of seizures. Often, in addition to daily anti-seizure treatment, children with epilepsy are prescribed a seizure rescue medication. This is a medication used only to stop a prolonged seizure or cluster of seizures as they are occurring. A clear plan should be outlined for use of these medicines. At minimum, a rescue medication is often used for motor seizures lasting more than five minutes. Many types of epilepsy are successfully treated with daily medications. Sometimes, more than one type of medication is needed to prevent seizures. In other cases, epilepsy does not respond well to medication. Sometimes, a child continues to have seizures after using two well-chosen medications. In these cases, the epilepsy is considered drug resistant, or “refractory” (meaning stubborn). Other treatments that should be explored include in these cases include: An evaluation for surgery is a very important step if a child does not respond to anti-seizure medication. This is not a last-resort measure. For the appropriately selected candidate, surgery may cure epilepsy. Undergoing evaluation for surgical candidacy does not commit the patient or families to surgery. Evaluation entails: Special diets can sometimes help epilepsy. These include the ketogenic diet or modified Atkins diet. Most children with epilepsy are able to live normal lives. Most children who have seizures easily controlled with medication do not require lifelong treatment. Many with well-controlled epilepsy can come off of seizure medication after a period of seizure freedom. Two years is a common yardstick for seizure freedom. Most children with epilepsy have normal development. They have a normal capacity for learning. However, some will experience delays in learning. Developmental delays can be observed prior to an actual diagnosis of epilepsy. These delays are often related to the underlying cause of the epilepsy rather than the seizures themselves. However, if a child is having very frequent seizures, this may impact their ability to learn. This is another important reason why seizures should be treated. Schools should be made aware of a child’s epilepsy diagnosis. This will help if the child has a seizure at school. If the child has a seizure rescue medication, it should be available anywhere the child spends a lot of time. This includes school. Children with epilepsy must take special precautions to assure they will be safe if they have a seizure. Common precautions relate to: Febrile seizures are the most common cause of seizures in young children ages 6 months to 5 years. Febrile seizures are provoked seizures. They are not considered epilepsy. Most febrile seizures take place during viral infections that cause the fever. The Epilepsy Leadership Council is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations. The mission is to develop and coordinate among its members shared projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas where working together produces greater efficiency and impact than working independently. For a list of more than 40 professional societies, patient advocacy organizations, and governmental agencies, please click here. EpilepsyAdvocate is a community of people living with epilepsy, their family members, and their caregivers. The website includes information about epilepsy, stories from the community, a Facebook page, and other resources including the UCB Family Epilepsy Scholarship Program, which offers educational scholarships up to $10,000 to people living with epilepsy, family members and caregivers pursuing higher education. This website provides information to help you better understand epilepsy. Learn more about epilepsy, gain knowledge about epilepsy medications, and feel empowered to manage epilepsy. Pediatric Epilepsy Surgery Alliance In addition, PESA has resources for medical professionals to assist in helping clinicians help the parents of their patients find the resources they need after surgery. Educators and therapists will also find helpful resources and information, including videos, guides, and relevant research. Patients who have undergone surgery are encouraged to register with the Global Pediatric Epilepsy Surgery Registry to help set future research priorities. JCN Podcast September 2018 Pediatric Epilepsy JCN: NICU Series- Interview with a Parent and the Brain Recovery Project: Childhood Epilepsy Foundation JCN: What Your Pediatric Neurologist Wants You to Know – Epilepsy CNF’s Epilepsy Education Hub covers different topics to consider when managing seizures and navigating an epilepsy diagnosis. Each topic in the multi-part Health Epilepsy Management Video Series focuses on what we heard from partners and families in our community as a top priority. Some of the questions posed to our experts come directly from caregivers and parents who were given the chance to submit their questions prior to recording these videos. The Health Epilepsy Management Video Series includes: Child Neurology Foundation (CNF) solicits resources from the community to be included on this webpage through an application process. CNF reserves the right to remove entities at any time if information is deemed inappropriate or inconsistent with the mission, vision, and values of CNF. ClincalTrials.gov for epilepsy in children and youth are clinical trials that are recruiting or will be recruiting. Updates are made daily, so you are encouraged to check back frequently. ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. This is a resource provided by the U.S. National Library of Medicine (NLM), which is an institute within the National Institutes of Health (NIH). Listing a study does not mean it has been evaluated by the U.S. Federal Government. Please read the NLM disclaimer for details. Before participating in a study, you are encouraged to talk to your health care provider and learn about the risks and potential benefits. Stand Together Against pRolonged Seizures (STARS) Study UCB is searching for people who experience prolonged epileptic seizures (i.e. lasting more than 3 minutes) to join this clinical research study. The STARS Study is testing an inhaler containing an investigational drug that has been designed to potentially stop a prolonged seizure once it has begun. Who can join the STARS Study? Visit the website for more information or download the brochure. CNF is pleased to share this information behalf of UCB BioSciences. The information in the CNF Child Neurology Disorder Directory is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. Content provided is for informational purposes only. CNF is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health related diagnosis or treatment options. Fisher RS, Acevedo C, Arzimanoglou A, Bogacz A, Cross JH, Elger CE, Engel J Jr, Forsgren L, French JA, Glynn M, Hesdorffer DC, Lee BI, Mathern GW, Moshé SL, Perucca E, Scheffer IE, Tomson T, Watanabe M, Wiebe S. ILAE official report: a practical clinical definition of epilepsy. Epilepsia. 2014 Apr;55(4):475-82. http://doi.org/10.1111/epi.12550 Fisher RS, Cross JH, French JA, Higurashi N, Hirsch E, Jansen FE, Lagae L, Moshé SL, Peltola J, Roulet Perez E, Scheffer IE, Zuberi SM. Operational classification of seizure types by the International League Against Epilepsy: Position Paper of the ILAE Commission for Classification and Terminology. Epilepsia. 2017 Apr;58(4):522-530. http://doi.org/10.1111/epi.13670 Harden C, Tomson T, Gloss D, Buchhalter J, Cross JH, Donner E, French JA, Gil-Nagel A, Hesdorffer DC, Smithson WH, Spitz MC, Walczak TS, Sander JW, Ryvlin P. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology. 2017 Apr 25;88(17):1674-1680. http://doi.org/10.1212/WNL.0000000000003685 Hirtz D, Berg A, Bettis D, Camfield C, Camfield P, Crumrine P, Gaillard WD, Schneider S, Shinnar S; Quality Standards Subcommittee of the American Academy of Neurology; Practice Committee of the Child Neurology Society. Practice parameter: treatment of the child with a first unprovoked seizure: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society. Neurology. 2003 Jan 28;60(2):166-75. http://doi.org/10.1212/01.wnl.0000033622.27961.b6 Kwan P, Arzimanoglou A, Berg AT, Brodie MJ, Allen Hauser W, Mathern G, Moshé SL, Perucca E, Wiebe S, French J. Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010 Jun;51(6):1069-77. http://doi.org/10.1111/j.1528-1167.2009.02397.x Ream MA, Patel AD. Obtaining genetic testing in pediatric epilepsy. Epilepsia. 2015 Oct;56(10):1505-14. http://doi.org/10.1111/epi.13122 Shinnar S, Glauser TA. Febrile seizures. J Child Neurol. 2002 Jan;17 Suppl 1:S44-52. http://doi.org/10.1177/08830738020170010601 Vossler, D, Gidal B. A summary of antiseizure medications available in the Unites States: 2020 Update. American Epilepsy Society; 2020 Sep.
Cincinnati Children’s Hospital Medical Center JUMP TO
Disorder Overview
SUMMARY
SIGNS AND SYMPTOMS
Generalized Seizures
Tonic clonic
Clonic
Tonic
Myoclonic
Atonic
Epileptic Spasms
Absence
Focal Seizures
Focal with impaired awareness
Focal aware
Epileptic Spasms
Syncope (fainting)
Breath-holding spells
Sleep disorders
Stereotypies
Migraines
Psychogenic non-epileptic events
Tics
Behavioral disturbances
Daydreaming
CAUSES
Brain Structure
Genetics
INVESTIGATIONS
Patient History
Lab Testing
TREATMENT AND THERAPIES
Daily Medicine
Seizures can be harmful to the brain
Seizures are associated with SUDEP
Rescue Medicine
Other Treatments
Surgery
Diet
OUTLOOK
Developmental Delay
School Considerations
Special Precautions
RELATED DISORDERS
Febrile Seizures
Resources
The Pediatric Epilepsy Surgery Alliance (formerly known as The Brain Recovery Project) enhances the lives of children who need neurosurgery to treat medication-resistant epilepsy. They empower families with research, support services, and impactful programs before, during, and after surgery. PESA’s programs include research-based, reliable information to help parents and caregivers understand when a child’s seizures are drug-resistant; the risks and dangers of seizures; the pros and cons of the various neurosurgeries to treat epilepsy; the medical, cognitive, and behavioral challenges a child may have throughout life; school, financial aid, and life care issues. PESA’s resources include a comprehensive website with downloadable guides, pre-recorded webinars, and virtual workshops; an informative YouTube channel with comprehensive information about epilepsy surgery and its effects; a private Facebook group (Education After Pediatric Epilepsy Surgery) with over 300 members; Power Hour (bi-monthly open forums and live virtual workshops on various topics); and free school training to help your child’s education team understand the impact of their epilepsy surgery in school. Their Peer Support Program will connect you with a parent who has been there. The Pediatric Epilepsy Surgery Alliance also hosts biennial family conferences and regional events that allow families to learn from experts, connect with other families, and form lifelong friendships. They also provide a travel scholarship of up to $1,000 to families in need to fund travel to a level 4 epilepsy center for a surgical evaluation.PUBLICATIONS
Podcast from SAGE Neuroscience and Neurology/Journal of Child Neurology (JCN). In this podcast, Dr. Alison Christy interviews Nina Natarajan about Phenobarbitol use. She also talks with Sookyong Koh about her article, Role of Neuroinflammation in Evolution of Childhood Epilepsy. The podcast ends with an interview with Shlomo Shinnar, Pediatric Epileptologist.
Podcast from SAGE Neuroscience and Neurology/Journal of Child Neurology (JCN). Dr. Sonika Agarwal of Children’s Hospital of Philadelphia talks to Audrey Vernick about her experience with pediatric epilepsy, perinatal stroke, and infantile spasms from a parent’s perspective. Brain Recovery Project website.
Podcast from SAGE Neuroscience and Neurology/Journal of Child Neurology (JCN). JCN’s Residents and Fellows Board Director, Dr. Alison Christy, interviews Dr. Inna Hughes of the University of Rochester on epilepsy.CNF’S EPILEPSY EDUCATION HUB
Research
Research Spotlight
Up to 250 people in study sites across the United States, Europe, Asia and Australia are expected to take part in the STARS Study. You and your study partner may be able to take part if you:
References
Thank you to our 2023 Disorder Directory partners:



