Epilepsy - Child Neurology Foundation

Child Neurology Foundation Disorder Directory Epilepsy

Authors: Nan Lin, MD,Cincinnati Children’s Hospital Medical Center; Krista Grande, MD, Connecticut Children’s Medical Center

Reviewed: July 2021

Updated: August 2023

Disorder Overview

SUMMARY

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:

Two unprovoked seizures occur
They occur at least 24 hours apart

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.

SIGNS AND SYMPTOMS

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. These affect the whole brain from the time the seizure begins.
Focal seizures. These start in one area of the brain. They may spread to involve the whole brain.

Generalized Seizures

Generalized seizures affect the whole brain from the time the seizure begins. They include the following types:

Tonic clonic

Look for unresponsiveness, with whole body stiffening, jerking, and shaking. Sometimes this includes tongue biting or bladder or bowel accidents.

Clonic

Look for sustained, rhythmic jerking.

Tonic

Look for sudden stiffening of muscles. This may cause the patient to fall. It usually lasts several seconds, but definitely under a minute.

Myoclonic

Look for brief muscle jerks, such as of arms or legs. Lasts for a fraction of a second.

Atonic

Look for sudden loss of muscle tone (going limp). This often causes falls. Often lasts one second or less.

Epileptic Spasms

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.

Absence

There are two types of absence seizures.

Typical absence. This includes a sudden onset of staring and unresponsiveness. It lasts a few seconds and includes an abrupt return to normal.
Atypical absence. This starts and ends more slowly than typical absence seizures.

Focal Seizures

Focal seizures start in one area of the brain. They can evolve to include the whole brain. They include the following types:

Focal with impaired awareness

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.

Motor symptoms. Look for automatisms. These are automatic movements like lip smacking or picking motions with the hands. Look also for shaking on one side of the body.
Non-motor symptoms. Look for autonomic symptoms (such as heart rate increase) and sensory symptoms (such as the patient smelling an unusual smell).

Focal aware

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.

Motor symptoms. Look for automatisms. These are automatic movements like lip smacking or picking motions with the hands. Look also for shaking on one side of the body.
Non-motor symptoms. Look for autonomic symptoms (such as heart rate increase) and sensory symptoms (such as the patient smelling an unusual smell).

Epileptic Spasms

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.

Syncope (fainting)

Consists of losing consciousness from temporary insufficient blood flow to the brain. Not typically harmful.

Breath-holding spells

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.

Sleep disorders

Includes sleepwalking and night terrors.

Stereotypies

Stereotypies involve making repetitive movements or sounds. Common examples include body-rocking and hand or arm flapping.

Migraines

Migraines are severe headaches.

Psychogenic non-epileptic events

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

Tics are repetitive movements or sounds that a person has the urge to do.

Behavioral disturbances

Tantrums and other behaviors can look like seizures.

Daydreaming

Daydreaming can look like a loss of awareness.

CAUSES

Most of the time, the cause of epilepsy is unknown. However, if uncovered, the cause may offer information about best treatment and prognosis.

Brain Structure

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.

Genetics

Sometimes, epilepsy is caused by a genetic disorder. Genetic testing (usually via a blood or saliva test) may detect this.

LABORATORY INVESTIGATIONS

Patient History

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:

Warning symptoms
Body movements during the event
The level of awareness during the event
What occurred after the event was finished

Lab Testing

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:

Be painless. EEGs are painless procedures.
Use electrodes. During an EEG, stickers or electrodes are placed on the scalp.
EEGs do not require cutting or shaving a child’s hair. The hair typically does not need to be modified. The scalp should be clean and accessible for electrodes.
Vary in length. EEGs often last about 30 minutes. Sometimes a child is hooked up to EEG for multiple days. This depends on the information needed.

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 (magnetic resonance image) of the brain 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.

TREATMENT AND THERAPIES

Daily Medicine

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:

Seizures can cause injury.

When a child loses responsiveness due to a seizure, they can fall or otherwise get hurt.

Seizures can be harmful to the brain.

Longer seizures especially can harm the brain.

Seizures are associated with SUDEP.

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. To learn more about SUDEP visit this webpage on the CNF website.

There are over 30 different anti-seizure medications to choose from. Some work better for certain types of seizures.

Rescue Medicine

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 used for motor seizures lasting more than five minutes.

Other Treatments

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 should then be explored.

Surgery

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.

Surgery evaluation entails:

First, collecting a lot of information about the structure of the patient’s brain and what the seizures look like on EEG.
Second, a discussion between a team of neurologists, neurosurgeons, neuroradiologists, and neuropsychologists to help decide if surgery is the right next step.

Multiple forms of epilepsy surgery exist. They include:

Resection. The portions of the brain that are causing seizures are removed.
Disconnection. The portions of the brain that are causing seizures are disconnected.
Neuromodulation. Surgical electrodes are implanted into the brain. The electrodes stimulate areas of the brain.
For responsive neurostimulation, electrical impulses are sent when a seizure is detected.
In rare cases, deep brain stimulation is used. In this case, electrical impulses are pre-programmed to be sent every so often. Impulses are sent whether a seizure is happening or not.
Vagus nerve stimulation (VNS). Some people with epilepsy may benefit from VNS. With VNS, the vagus nerve is electrically stimulated. The nerve is stimulated regardless of whether a seizure is happening or not.
A stimulator is implanted in the chest. It has a wire connected to the vagus nerve in the neck. Small amounts of electricity are delivered via this wire.
Stimulation occurs off and on throughout the day.

VNS can help reduce the overall number of seizures that might occur. In some patients, using a magnet to deliver an extra impulse with the VNS can be helpful for seizure rescue therapy. Magnet use can shorten or stop seizures.

Diet

Special diets can sometimes help epilepsy. These include the ketogenic diet or modified Atkins diet.

OUTLOOK

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.

Developmental Delay

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.

Special Precautions

Children with epilepsy must take special precautions to make sure they will be safe if they have a seizure. Common precautions relate to:

Water. The child should not bathe alone (showers are fine). They should not swim without adult supervision.
Heights. Not standing in high places where a fall related to the seizure could hurt the person.
Fire. Not standing next to open fire or cooking by themselves where a burn could cause serious harm to the person.
Driving. A teenager with epilepsy should discuss driving with a neurologist. Most states have laws about driving with epilepsy. A common requirement for drivers with epilepsy is that they are seizure-free for a specific period of time. This period varies from state to state. It is often between 3 and 12 months.

School Considerations

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.

Resources

Epilepsy Leadership Council

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.

Epilepsy Advocate

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.

Exploring Epilepsy

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 Research Consortium
The Pediatric Epilepsy Research Consortium (PERC) is a national collaboration of more than 60 U.S. pediatric epilepsy centers and over 250 pediatric epileptologists, neuropsychologists, and researchers. PERC was founded in 2010 by physicians and scientists determined to find better treatments for their patients through their affiliated projects. With thirteen special interest groups (SIGS), PERC works to improve the care of every child with epilepsy. Many severe childhood epilepsies are relatively rare, and it is only through a large collaborative effort involving multiple centers that progress in their treatment and outcomes will be made. Look for more research publications and findings to become available on their website in 2023 and 2024.

Pediatric Epilepsy Surgery Alliance
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.

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.

PUBLICATIONS

JCN Podcast September 2018 Pediatric Epilepsy
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.

JCN: NICU Series- Interview with a Parent and the Brain Recovery Project: Childhood Epilepsy Foundation
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.

JCN: What Your Pediatric Neurologist Wants You to Know – Epilepsy
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

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:

Go To Epilepsy Hub

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.

Research

Find Clinical Trials For Epilepsy In Children

Find Clinical Trials For Epilepsy In Youth

These 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.

For more information about participation in clinical trials, check out our education hub on the topic here.

Information for research and clinical trials specific to Epilepsy can be found on the Pediatric Epilepsy Surgery Alliance website.

Research Spotlight

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?
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:

Are 12 years of age or older
Have focal or generalized epilepsy, or a combination of the two
Have experienced 2 prolonged seizures within the past 3 months
Prolonged seizures last more than 3 minutes
Have an adult who can act as a study partner to assist you throughout the study

Visit the website for more information or download the brochure.

CNF is pleased to share this information on behalf of UCB BioSciences.

REFERENCES: REVIEWS AND GUIDELINES

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.

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.

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

LABORATORY INVESTIGATIONS

Patient History

Lab Testing

EEG

MRI

TREATMENT AND THERAPIES

Daily Medicine

Seizures can cause injury.

Seizures can be harmful to the brain.

Seizures are associated with SUDEP.

Rescue Medicine

Other Treatments

Surgery

Diet

OUTLOOK

Developmental Delay

Special Precautions

School Considerations

RELATED DISORDERS

Resources

PUBLICATIONS

CNF’S EPILEPSY EDUCATION HUB

Research

Research Spotlight

REFERENCES: REVIEWS AND GUIDELINES

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