Epilepsy
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Epilepsy
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Authors: Krista Grande, MDNan Lin, MD 
Cincinnati Children’s Hospital Medical Center 

Reviewed: July 2021 

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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 beginsThey 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 trunkTypically lasts one second or lessThe spasms tend to occur in clusters. This may be 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. 

Sleep disorders

Includes sleepwalking and night terrors. 

Stereotypies

Involves 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 genetic disorder. Genetic testing (usually via a blood or saliva test) may detect this 

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.  
  • Require no hair modification. EEGs do not require cutting or shaving a child’s hair.  
  • 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, 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.  

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 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. 

 

There are over 30 different anti-seizure medications to choose fromSome 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 often 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 that should be explored include in these cases include: 

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. 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 

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 epilepsyThese 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.  

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.  

Special Precautions

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

  • Bathing. Not bathing alone (showers are fine). 
  • Swimming. Not swimming without adult supervision. 
  • 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.  

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.

The Brain Recovery Project: Childhood Epilepsy Surgery Foundation
The Brain Recovery Project (BRP) provides research-based, reliable information to help parents and caregivers understand when a child’s seizures are drug-resistant. The BRP team explains the risks and dangers of seizures and helps families weigh the pros and cons of the various brain surgeries to stop them. Caring BRP team members also help parents understand the medical, cognitive, and behavioral challenges a child may have through life, as well as guide parents through financial and life care issues, and the IEP process. If desired, parents can connect with other families for support. The Brain Recovery Project also hosts a private Facebook group, Education After Pediatric Epilepsy Surgery with over 200 members.

In addition, BRP 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 in setting future research priorities.

PUBLICATIONS

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.

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.

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.

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 

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. 

Research Spotlight

A Clinical Trial for Epileptic Encephalopathy with Continuous Spike-and-Wave during Sleep

We are looking for children 4 to 12 years old with a clinical diagnosis of EECSWS to take part in the Steamboat Study, a 21-week clinical research study. The primary purpose of this clinical research study is to evaluate the safety and effectiveness of an investigational medication for EECSWS.

Individuals will be evaluated to determine their eligibility to participate in this study. Each patient who qualifies will receive either the investigational medication or a placebo, as well as study-related medical exams and study-related laboratory tests, at no cost. Compensation for time and travel may also be available.

To learn more, visit SteamboatEpilepsy.com

CNF is pleased to share this information on behalf of Neurocrine Biosciences. 

A Study to Assess the Pharmacokinetics (PK) and Safety of Staccato Alprazolam in Adolescent Study Participants With Epilepsy

UCB is currently enrolling a small Phase 1 study to assess the Pharmacokinetics (PK) and Safety of Staccato Alprazolam in adolescent patients with epilepsy (ages 12-17) at 10 sites throughout the U.S.

Visit the ClinicalTrials.gov webpage for this trial here.

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. 

References

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.  

Thank you to our 2021 partners Acadia, Aeglea, Amicus Therapeutics, bluebird bio, Eisai, Greenwich Biosciences, Liva Nova, Origin, Ovid, PTC Therapeutics and UCB for their support of the Disorder Directory.

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