Seizures/Epilepsy

Guidance for primary care clinicians diagnosing and managing children with seizures/epilepsy
Pediatricians care for a wide range of children with seizures and epilepsy, including the typically developing child with infrequent seizures and the severely impaired child with complicated medical regimens. This module focuses on assessing and managing children with uncomplicated clinical situations involving seizures and epileptic syndromes. Less common seizure types and epilepsy syndromes, as well as the emergency evaluation and management of seizures, are not covered here. The Portal provides information about some specific seizure syndromes, including:

Other Names

Convulsions
Fits

Key Points

Flashing lights can trigger seizures
Seizures triggered by flashing lights occur in approximately 9% of people with epilepsy. It is more common in children and adolescents and becomes less common with age. The flashing frequency most likely to cause seizures varies, but it is often between 15 and 80 hertz. Sensitivity to flashing lights may be somewhat predicted by an EEG, which usually involves provocation with lights flashing at varying frequencies. [Hughes: 2008]
Non-epileptic seizures
Psychogenic non-epileptic seizures (PNES) are sometimes seen in older children and adolescents and can be found in individuals who also have epileptic seizures. They should be considered when seizures are not responding to medications, particularly in older children and adolescents with a history of somatoform illnesses or with long, detailed responses to a review of systems. [Benbadis: 2007] Patients with suspected non-epileptic seizures are likely best referred to pediatric neurology since the diagnosis may require video-EEG monitoring.
The term ‘pseudoseizure’ is generally avoided because of its negative connotation. PNES is a diagnosable disorder with potentially severe consequences if untreated; it is not a diagnosis of exclusion. Most children and adolescents will improve once the correct diagnosis is made and appropriate treatment is initiated.
Seizure precautions for children with seizures or possible seizures
Families of children with seizures or possible seizures need to know seizure precautions. Children should be observed whenever near water. This includes showering rather than taking a bath unless an adult is present. One-to-one observation by an adult is needed for a child with seizures swimming or in a hot tub. Children should also be observed around water heaters, campfires, saunas, and cooking areas. In young children with seizures, babysitters should be aware of seizure precautions and what to do if there is a seizure.
Seizures and driving
Rules for driving after a seizure vary by state. A few states require reporting by the treating physician; most others require the individual with seizures to report to them. There are varying amounts of times that individuals must be seizure free, with or without AEDs, before driving is allowed. State Driving Laws (Epilepsy Foundation) provides a searchable database.
Rescue drugs for breakthrough seizures
A description of rescue drugs should be part of a seizure action plan if the child has prolonged seizures or clusters of seizures. Children older than 12 may be prescribed Nayzilam, an intranasal midazolam medication. Children older than 6 may be prescribed Valtoco, intranasal diazepam. In younger children, rectal diazepam or nasal midazolam may be used.
Nasal midazolam for young children is given to each nostril by a mucosal atomizer device. One “kit,” which is what is used at each administration, consists of the total dosage divided into 2 syringes that each have 2 mucosal atomizer devices (MADs). Pharmacies need to special order the MADs.
Consider possible pregnancy when choosing medication
Certain anti-seizure drugs (ASMs) are more strongly associated with major malformations of the fetus than others. Some examples include facial abnormalities (phenytoin, phenobarbital) and neural tube defects (valproic acid). No ASMs have proven to be completely safe in pregnancy, but seizures are also a potential risk to the mother and fetus. A primary care clinician should consider referring a patient with seizures who is pregnant or considering pregnancy to a neurologist.
Alternatives to medication
Alternative therapies are sometimes offered for certain kinds of epilepsy and selected patients. These therapies include the ketogenic diet, epilepsy surgery, the vagal nerve stimulator, deep brain stimulation and responsive neurostimulation. Because the alternatives are not necessarily any more benign than medication, they are generally used for seizures that have been unresponsive to medications. Neurologists attempt to use single medications first, before adding a second or even third medication or trying an alternative therapy to achieve seizure control. Depending on the family preference and with neurology guidance, these alternatives may be tried for intractable seizures. Medications are successful in only about 70% of patients; these alternative and well-studied treatments have been successful additions in helping children achieve seizure control.

Practice Guidelines

Kanner AM, Ashman E, Gloss D, Harden C, Bourgeois B, Bautista JF, Abou-Khalil B, Burakgazi-Dalkilic E, Llanas Park E, Stern J, Hirtz D, Nespeca M, Gidal B, Faught E, French J.
Practice guideline update summary: Efficacy and tolerability of the new antiepileptic drugs I: Treatment of new-onset epilepsy: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society.
Neurology. 2018;91(2):74-81. PubMed abstract

Kanner AM, Ashman E, Gloss D, Harden C, Bourgeois B, Bautista JF, Abou-Khalil B, Burakgazi-Dalkilic E, Llanas Park E, Stern J, Hirtz D, Nespeca M, Gidal B, Faught E, French J.
Practice guideline update summary: Efficacy and tolerability of the new antiepileptic drugs II: Treatment-resistant epilepsy: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society.
Neurology. 2018;91(2):82-90. PubMed abstract

Diagnosis

When a child presents having experienced a paroxysmal event, the clinician must determine if the event is a seizure. Many paroxysmal events are not seizures and should not be treated with anti-seizure medication (see the Differential Diagnosis section).
Seizures come in many shapes and sizes. This variability is caused by where in the brain the electrical disturbance starts and how far the electrical disturbance spreads. Seizures are generalized or focal and often need a different diagnostic workup and treatment depending on the type.
Most seizures last seconds to minutes. A seizure lasting 5 minutes or longer is a medical emergency. When a child has more than 1 event separated by time without an identifiable proximal cause (e.g., encephalitis or head injury), the term epilepsy is used.

Presentations

Seizure (or convulsion) involves a sudden, involuntary, time-limited alteration in behavior, motor activity, autonomic function, consciousness, or sensation, and it is accompanied by an abnormal electrical discharge in the brain. Seizures can be provoked by acute medical conditions (e.g., trauma, electrolyte disturbances, meningitis), or they can occur without provocation. The aim of seizure treatment to prevent recurrent alterations in behavior, motor activity, or consciousness caused by abnormal, episodic brain activity.

Epilepsy is a condition in which an individual has two unprovoked seizures OR one seizure and epileptiform EEG or a brain MRI showing a lesions that is known to cause epilepsy (such as TSC, hypothalamic hamartoma, etc.).

Status epilepticus is a common, life-threatening neurologic disorder defined as more than 5 minutes of continuous seizure activity or shorter recurrent seizures without recovery of consciousness between seizures. Status epilepticus most commonly occurs in children with known epilepsy following medication changes or missed doses, but it also can occur as the first manifestation of an epileptic syndrome or with a neurologic insult such as a stroke. Most seizures will stop on their own within 5 minutes of onset. A child with a seizure lasting 5 minutes or more will likely require medical intervention to stop it. Emergency departments will have status epilepticus protocols and may have first responder protocols as well, depending on the location.
Epilepsy in a child may have an underlying cause such as an abnormal brain (e.g., congenital brain malformation, sequelae of an in-utero infection or prematurity), infection, metabolic disorders, and head injury or tumors, and these conditions should be ruled out when looking for a cause for new seizures in a child. Illness, sleep deprivation, alcohol, certain medications, and illegal substances may lower the seizure threshold and should also be considered. If no underlying external cause is found, the child may have a primary epilepsy. Genetic testing for epilepsy without an obvious underlying cause is increasingly performed and may help guide treatment.

Diagnostic Criteria and Classifications

If the child has had a seizure, classify it by type (provoked or unprovoked, focal (localized) or generalized, etc.) to determine the appropriate diagnostic workup and treatment. A complete description of the event, including age of the patient, description of the seizure (focal vs. generalized), and related events (e.g., sleep deprivation before, a period of profound sleepiness afterward, associated fever, etc.) is needed. The Seizure Assessment Tool (AAN) (PDF Document 41 KB) adapted from [Hirtz: 2000] may be helpful.
Seizure type
Seizure type will guide the search for etiology and treatment choices if anti-seizure medication (ASM) therapy is considered. A seizure is classified as a focal seizure either by the description of the seizures (e.g., first his face was twitching, and then his left side started twitching) or by EEG (abnormalities in EEG activity localized to one part of the brain, at least at the start of the seizure).
  • Focal onset seizures (also called localized or partial seizures) have symptoms at the onset that are convincingly localized in the motor, somatosensory, special sensory, autonomic, or limbic systems. Examples of focal onset seizures include a seizure that starts with limb jerking on one side of the body, tingling on one side of the body, a sense of fear, or vomiting. Because focal seizures may be associated with focal brain pathology (e.g., stroke or tumor), imaging is almost always indicated. The exception to imaging is if there is a diagnosis of a childhood epilepsy syndrome, such as childhood epilepsy with centrotemporal spikes. Seizures with focal onset before generalization are classified as focal seizures with secondary generalization and for purposes of evaluation, should be treated as focal seizures. The focal onset may be subtle and must be asked about – for instance, did the child's eyes go to one side before the tonic-clonic activity was noted?
  • Generalized seizures begin with widespread manifestations caused by widespread electrical dysfunction of the entire cortex. Types of generalized seizures include absence seizures and generalized tonic-clonic seizures.
Epilepsy syndromes
If a thorough history and physical exam do not suggest any provoking cause for a seizure, the child might have an epilepsy syndrome. Epilepsy syndromes can be classified using the age of onset and seizure type as follows:
  • Neonatal seizures with onset between birth and 28 days of age
    • Epilepsy syndromes include benign neonatal convulsions and early epileptic encephalopathies, such as Otahara syndrome. Children with seizures in this age group should be urgently evaluated for a provoking cause, and if none is found, then seen by a pediatric neurologist.
  • Seizures with onset from 2 months to 3 years of age
    • In this age group, epilepsy syndromes can range in severity of impact from benign to devastating.
    • Febrile Seizures are common and generally benign. These often are familial and may be part of Generalized Epilepsy with Febrile Seizures Plus (GEFS+), a syndrome described further in [Scheffer: 2005].
    • Benign myoclonic seizures - generally benign
    • Severe myoclonic epilepsy of infancy - usually with a very poor prognosis (Dravet syndrome)
    • Infantile Spasms - usually severe with very poor prognosis
    • Missing issue with id: aa8b09e2.xml - usually severe with very poor prognosis.
  • Seizures with onset between 3 - 10 years
    • Most children in this group have genetic epilepsies that carry a good prognosis.
    • Childhood Absence Epilepsy
    • Childhood Epilepsy with Centrotemporal Spikes (CECTS), formerly known as benign rolandic epilepsy or benign epilepsy with centrotemporal spikes (BECTS), are focal onset seizures of the face and arm, occur mostly at night, usually with sporadic seizures, and may not require treatment with AEDs. o Epilepsy with generalized tonic-clonic (grand mal) seizures upon awakening (EGMA) is a genetic variety of tonic-clonic epilepsy that has a predilection for occurring upon awakening. It may resolve by puberty. Seizures have onset from 5 years of age, most commonly over the age of 10 years. See Epilepsy Generalized Tonic Clonic Seizures Alone (Epilepsy Foundation)
    • These epilepsy syndromes may also have a genetic origin, but they usually don't resolve spontaneously. Youths with these epileptic syndromes usually have normal lives but may need to be on medication indefinitely.

Screening & Diagnostic Testing

An EEG is usually performed as outpatient and not emergently to obtain additional information. The type of seizure and the EEG results will determine if imaging should be performed. An EEG can show the specific area of onset in a focal onset seizure and can confirm the diagnosis of an epilepsy syndrome. The American Academy of Neurology recommends that all children with a first afebrile seizure undergo EEG. This is usually part of the evaluation in children who are thought to have had a seizure. [Hirtz: 2000]

EEGs should not be performed in the absence of clinical seizures because non-specific abnormalities in background activity can be seen in 10% of children without seizures, and 2-3% of healthy children may have epileptiform patterns on EEG (e.g., spikes or sharp waves) but never have a seizure. Conversely, normal EEGs do not rule out seizures.
A follow-up EEG may be helpful when seizures change in character or frequency or stop responding to a previously effective ASM. EEGs do not need to be performed routinely. Sometimes overnight video EEGs are necessary to determine whether a given frequent event is seizure or behavior, particularly in a child with known developmental delay or an abnormal neurological exam.

Laboratory Testing

Depending on the presentation of seizure, laboratory testing may be help identify a metabolic, electrolyte, or acid-base derangement that could cause seizures or be associated with a seizure-causing diagnosis. Examples include hypo- or hypernatremia, severe acidosis, hyperammonemia, hypocalcemia, and many others. These would usually be performed in an emergent setting unless there are signs/symptoms of these disorders in the Emergency Room or primary care clinician's office. Baseline labs for seizures in a neonate might include comprehensive metabolic profiles, CBC with differential, serum amino acids, urine organic acids, acylcarnitine profile, blood PH, lactate, pyruvate, ammonia, and biotinidase. Some medications (e.g., valproic acid, carbamazepine) require the child to have comprehensive metabolic profiles and CBCs before they are initiated and periodically during treatment, along with drug levels.

Imaging

Imaging is often performed as part of the seizure workup unless there is a clear clinical diagnosis of a benign or genetic etiology (e.g., absence epilepsy or childhood epilepsy with centrotemporal spikes). [Berg: 2000], [Gaillard: 2009] Findings that are likely to increase the yield of an imaging study include: [Sharma: 2003]
  • Seizure with focal onset
  • Seizures in a newborn or young infant
  • Status epilepticus at any age
  • Focal abnormality on EEG
Approximately 50% of imaging studies were reported to be abnormal in children with new-onset seizures with localizing features. [Gaillard: 2009]

Brain MRI is preferred over a head CT when looking for cause of seizure or epilepsy. When a particular etiology for seizures is suspected (e.g., prenatal stroke), an MRI is useful to confirm the diagnosis and rule out other possibilities, such as a developmental brain malformation (e.g., schizencephaly) or a new condition (e.g., abscess or tumor).

Genetic Testing

Genetic testing may be indicated if there is a genetic condition, such as tuberous sclerosis, a metabolic condition causing seizures, or the possibility of a genetic epilepsy syndrome. Some epilepsy syndromes are known to be genetic and specific testing is available. A number of other epilepsy syndromes are diagnosed clinically. Genetic testing is generally directed by neurology and/or genetics with genetic counseling available for the family. Genetic testing for epilepsy will continue to improve and will be used increasingly in the future. See:
  • Striano P, Minassian BA.
    From Genetic Testing to Precision Medicine in Epilepsy.
    Neurotherapeutics. 2020;17(2):609-615. PubMed abstract / Full Text

  • Symonds JD, McTague A.
    Epilepsy and developmental disorders: Next generation sequencing in the clinic.
    Eur J Paediatr Neurol. 2020;24:15-23. PubMed abstract

  • Ritter DM, Holland K.
    Genetic Testing in Epilepsy.
    Semin Neurol. 2020;40(6):730-738. PubMed abstract

Genetics & Inheritance

Children may have a heritable epilepsy syndrome or an underlying condition that predisposes them to seizures (e.g., tuberous sclerosis, developmental delay, or autism), so consideration of a genetic component for a child that presents with seizures/epilepsy is critical. In some epilepsies, a polygenic inheritance pattern may be present, whereas a clear genetic cause may be identifiable in some children. Genetic results may provide targets for precision medicine in some genetic syndromes (such as Dravet syndrome, pyridoxine-dependent epilepsy, or glucose transporter 1 deficiency).

Prevalence

Pediatric epilepsy incidence in Norway was reported as 144 per 100,000 (1:694) in the first year of life and 58 per 100,000 (1:1,724) for those 1-10 years old. [Aaberg: 2017] The cumulative incidence of epilepsy at age 10 years was 0.66% with the majority (0.62%) having active epilepsy. These numbers were similar to those reported in another developed country where incidence of epilepsy appears to have stabilized. [Meeraus: 2013] In 2015, 1.2% of the US population had active epilepsy (95% CI = 1.1-1.4), which translates to about 3 million adults and 470,000 children. [National: 2018]

Differential Diagnosis

Non-epileptic paroxysmal events may mimic epilepsy and need to be considered before a diagnosis of epilepsy is given. The duration, place, timing of attacks, and state of consciousness may confuse pediatricians about the diagnosis of epilepsy and non-epileptic paroxysmal events. The clinical history of the event(s) is the most useful information in arriving at the diagnosis that an event was a seizure. Yet, even a detailed history may not be sufficient to distinguish between a seizure or some other type of episode, such as Syncope, in a typically-developing child. Families can be given a Seizure Diary (PDF Document 75 KB) to record descriptions of events and determine patterns. The family can also be asked to video an event, which is sometimes very helpful.

For a one-time event in a child with a normal clinical evaluation, reassurance may be the best approach. Because it is difficult to be certain that a seizure has not occurred, the child should be reevaluated if a new or similar event occurs. If there is uncertainty, seizure precautions should be recommended (see Missing issue with id: 870d7bba.xml) and documented.

An EEG may not always help since mildly abnormal EEGs are common in the general population and many children with seizures have normal EEGs. If the child has neurologic abnormalities as a baseline, seizures are much more likely, and the threshold for referral to pediatric neurology for further evaluation and management should be lower. If uncertainty continues after a period of observation and the events are occurring frequently enough to warrant testing, a 2-day video EEG as an inpatient or a prolonged ambulatory EEG where the patient continues to do his or her usual activities may be helpful. In episodes where this degree of uncertainty exists, a consultation with pediatric neurology may be useful.
Features of an event that is more associated with seizures than with non-seizure events:
  • Precipitating events
    • Head trauma, conditions that cause abrupt electrolyte changes (gastroenteritis, diabetes), febrile illness
  • Pre-ictal symptoms
    • Behavior or mood change or an aura minutes before a seizure may be a symptom to a focal onset.
  • Ictal description (appearance during the seizure)
    • Vocal – cry or gasp, slurring of words, garbled speech
    • Motor – head or eye turning, eye deviation, posturing, jerking, stiffening, automatisms,
    • Autonomic – pupillary dilation, drooling, change in heart or respiratory rate, incontinence, pallor, vomiting; loss of consciousness or inability to understand or speak
  • Generalized or focal movements; respiration
    • Change in breathing pattern, cessation of breathing, cyanosis
  • Postictal symptoms (appearance following the seizure)
    • Amnesia for events, confusion, lethargy, sleepiness, headaches, and muscle aches
    • Transient focal weakness (Todd's paralysis), nausea/vomiting, bitten tongue
Differential diagnoses of a paroxysmal event may include:
  • Syncope
    • Note that after the syncopal event, some jerking may occur, but this is not due to abnormal electrical activity in the brain and is not an epileptic seizure. This jerking and syncopal events do not respond to seizure medications.
  • Cardiogenic
  • Cough
  • Migraine (confusional)
    • Time of course is usually longer than most complex partial seizures; EEG is normal during event. See Headache (Migraine & Chronic) for diagnosis information.
  • Metabolic disorders
    • Hypoglycemia, hypocalcemia, and rapid sodium shifts can all cause non-epileptic seizures.
  • Paroxysmal vertigo
  • Gastroesophageal reflux in infancy/childhood
    • Some patients may have actual seizures due to anoxia when the child aspirates. More commonly, they have chewing, mouthing movements when refluxing that look like complex partial seizures. This is easily distinguished using EEG and pH probe monitoring and resolves with anti-reflux medications. May patients also have arching with torticollis and dystonic posturing due to reflux, particularly observed in neurologically abnormal children (Sandifer's syndrome).
    • See Gastroesophageal Reflux Disease.
  • Breath-holding spells
    • Pallid and cyanotic types are both precipitated by a noxious event. Note that seizures may rarely occur from lack of oxygen during the spell, but these are reflex seizures, not seizures representative of epilepsy; they will not respond to antiepileptic drugs.
  • Rage attacks and temper tantrums
    • Tantrums are provoked by an adverse experience, and the patient has volitional motor activity and vocalizations.
  • Paroxysmal kinesiogenic or dystonic choreoathetosis
    • These are rare disorders characterized by episodic involuntary movements and preserved awareness.
  • Benign infantile myoclonus
    • This looks like infantile spasms, but with normal EEG and development.
  • Shuddering attacks
  • Daydreaming/inattention
    • Non-epileptic staring spells are most easily identified by preserved responsiveness to touch, body rocking, and initial identification by a teacher or health care professional. Epileptic events are more common when limb twitching, upward eye movement, interruption of play, or urinary incontinence is present. Non-epileptic staring spells are not provoked by hyperventilation.
  • Night terrors
    • The patient appears confused and frightened during stage 4 sleep. A sleep study is sometimes required to distinguish from complex partial seizures.
  • Tics/habit spasms
    • Tics can be consciously suppressed when pointed out, and the patient "feels better" when they're allowed to indulge the tic.
  • Narcolepsy/cataplexy/sleep apnea
    • There is a sudden loss of all muscle tone and patient falls to ground. Patient is fully aware but cannot move; occurs in response to strong emotion such as laughter.
  • Psychogenic non-epileptic events
    • These often occur in the setting of epilepsy, so the patient has both real and facetious seizures. Electroencephalogram will allow them to be distinguished from one another.
  • Munchausen syndrome by proxy
    • Consider when patient's seizures, EEG, and response to medications don't make sense. It is difficult to determine without EEG/video telemetry.

Co-occuring Conditions

Children with epilepsy have a higher incidence of mood, learning, and attention disorders, possibly due to the underlying epileptic syndrome, the seizures themselves, or the effects of the antiseizure medications. Children with epilepsy should receive periodic Developmental Screening and screening for mood disorders (see Mental Health Screening for Children & Teens).

Prognosis

The 2 primary elements of prognosis are seizure recurrence risk and the likelihood for seizures to be controlled by medication. In general, prognosis will depend on the underlying etiology and the type of seizure. Prognosis for a child with seizures may vary from excellent to devastating.
  • Seizure recurrence risk after a first afebrile, generalized, tonic-clonic seizure in a typically developing child is 25-50% (children with intellectual disability, cerebral palsy, and/or a family history of epilepsy are more likely to have recurrent seizures):
    • Age of the child and duration of the event do not affect the risk of recurrence.
    • Half of recurrences will occur in the first 6 months following a first seizure, two-thirds within 1 year, and 90% or more within 2 years.
    • The EEG is an important predictor of recurrence. If the EEG is normal, the 5-year recurrence risk is 25%.
    • The first afebrile seizure in a typically developing child is not usually treated with anticonvulsants, unless the EEG or the brain MRI indicate increased seizure risk.
  • Likelihood for seizures to be controlled by medication:
    • 50% of children with epilepsy will respond to the first medication.
    • 20-30% of children will not respond completely, will require 2 medications for control, or will change medication before control is reached. When a child has failed 2 medications, meeting the definition for intractable epilepsy, other therapeutic options may be considered (surgery, neuromodulation, or the ketogenic diet). • Up to 75% of children will experience prolonged remission from seizures and will be able to stop medication after 2 or more years.
    • Up to 75% of children will experience prolonged remission from seizures and will be able to stop medication after 2 or more years.

Treatment & Management

A fundamental principle in the treatment of seizures is to initiate therapy with an anti-seizure medication (ASM) known to be effective for the given seizure type or epilepsy syndrome, and then increase the dose until the seizures are controlled or undesirable side effects occur. This implies that drug levels should not be used to define treatment failure. In the absence of adverse effects, a serum level that exceeds a 'therapeutic range' does not justify switching to another treatment. Drug levels are sometimes useful once seizures have been controlled to determine the level required for seizure control for a particular patient.
Important information to guide management will include the number of seizures since the last visit, similarity to past seizures, new medical problems, daily functioning, and school performance (if applicable). An app, like Seizure Tracker (SeizureTracker.com) or others, may be helpful for families to track the number and type of seizures. For children on an ASM, ask about the doses the child is taking. Don't assume that the family has continued the ASM(s); a number of issues can lead to families changing the dosage or frequency of administration.

Neurology

Activity restrictions in children with seizure
In some situations, losing consciousness or physical control due to a seizure could result in disastrous consequences. Yet, restricting activities, particularly for kids, can be difficult and have its own developmental, social, and health consequences. Discuss with parents and children the likelihood of a future seizure and risk for injury. Explore alternatives for activities and the need for supervision, particularly in the following circumstances:
  • Water (baths, pools, lakes/ocean): A child with seizures should be supervised 1 to 1 by an adult while swimming
  • Heights (climbing trees, playground equipment, mountains)
  • In/on moving conveyances (bikes, boards, skis)
  • Fire/equipment that may cause a burning injury (water heaters, cooking equipment)
  • Unskilled caregivers (child having a seizure without an adult who knows what to do, including the family at a friend’s house, a babysitter, etc.)
Children that have frequent seizures, particularly atonic or drop attacks, will sometimes need to be fitted with a helmet to prevent head injury.
State laws concerning driving with epilepsy vary by state; consult the Division of Motor Vehicles for each state.
Initial treatment
Some children with seizures might not require any medical therapy. These include those with a first-time generalized seizure, febrile seizures, benign myoclonic epilepsy, and some patients with childhood epilepsy with centro-temporal spikes.
Oral contraceptives may interfere with anti-seizure (ASM) medications or vice versa. In young women who may become pregnant, certain seizure medications should be avoided. Some ASMs are associated with teratogenic effects.
All children with seizures should have an action plan so families and providers know what to do in the case of a breakthrough seizure. See Sample Seizure Action Plan (University of Utah) (PDF Document 67 KB) for an example.

End of Visit Instructions (After Visit Summaries), including a seizure action plan, should be given to all families with a child with epilepsy. These should include seizure precautions and what to do if a seizure occurs. See Missing issue with id: 7c5c330c.xml. For those requiring medication, levetiracetam is useful for most children with generalized seizures other than absence seizures, and oxcarbazepine is useful for children with focal onset seizures as determined by semiology (description of the event) or EEG. Patients who have absence epilepsy or juvenile absence epilepsy are exceptions to the rule of levetiracetam as the first choice for generalized seizures. Instead, evidence-based medicine suggests they may be treated with ethosuximide, valproic acid, or lamotrigine.

All anti-seizure (ASM) medications are started at a low dose and gradually increased. Patients and families should be instructed to call if a rash develops after starting medication. If a rash occurs, the patient should be seen emergently, and, if it is probable that it is a drug rash, the medication should be stopped. Drug rashes are usually generalized; a dermatologist evaluation may be helpful if there is a question.
  • Levetiracetam (Keppra), available as a generic, is the most common medication started for children with epilepsy. Labs are not needed before or after starting this medication; levels are only rarely checked. There are very few drug interactions, and the main side effect, seen in a small percentage of children, is behavioral. (Note behavior may worsen initially but then go back to baseline in some children.) Levetiracetam comes as both a liquid and tablets.
  • Oxcarbazepine (Trileptal), also available as a generic, comes as both a liquid and tablets. Although some providers will check a blood sodium level before and after starting this medication, no other labs or levels are necessary in most cases.
  • Lamotrigine can cause a life-threatening rash (toxic epidermal necrolysis or Stevens-Johnson syndrome) and is increased more slowly than other epilepsy medications. Although this rash is rare (1% in children under 16 years of age and 0.3% in adults), families need to be aware so they may monitor for skin reactions. Symptoms that are concerning for a more severe reaction to lamotrigine include joint and muscle pain, fever, general discomfort, and blisters. Note that ethosuximide, while effective for absence seizures, will not control the generalized tonic-clonic seizures that may occur in juvenile absence epilepsy.
  • Many more medications are now available but are used if first-line ASMs fail by pediatric neurologists.
When seizures are refractory to the initial AED
It may be that the family is confused about the dosing, not giving the full dose due to concern about side effects, or that the seizures are refractory to treatment. Non-epileptic seizures are also a possibility. A referral to pediatric neurology may be helpful in sorting out these possibilities. Epilepsy surgery to remove lesions responsible for seizures [Conway: 2018], a vagus nerve stimulator, responsive neurostimulation (RNS) are techniques increasingly being used for individuals with intractable epilepsy. See Epilepsy Surgery.

Children with infantile spasms and seizures not responding to first-line treatment should generally be referred to pediatric neurology. Patients with infantile spasms are initially treated with high-dose steroids or, sometimes, vigabatrin.

Children with intractable seizures may have one of the epilepsy syndromes that are very difficult to manage. These include Dravet and Lennox-Gastaut Syndrome some of the partial epilepsies. Children with refractory epilepsy should be referred to an epilepsy center for management with multiple ASMs, implantation of a vagus nerve stimulator, or other neurostimulation modality such as RNS or DBS, or Epilepsy Surgery. Epilepsy surgery may be the treatment of choice early on for some types of epilepsy and, over the long run, might be less costly and more effective than ASMs. [Langfitt: 2007]

A new therapy, responsive neurostimulation (RNS), involves a neurostimulator implanted in the seizure onset areas of the brain. It consists of a stimulator, implanted leads, a wireless programming wand and associated computer hardware and software. It monitors brain activity in real time and delivers electrical stimulation in response to seizure activity. It is approved in the U.S. as adjunctive therapy for medically-resistant focal onset epilepsy Responsive Neurostimulation (Epilepsy Foundation). Deep brain stimulation, approved in adults, is also being used in the pediatric population. [Starnes: 2019]
Status Epilepticus
When a seizure, either a new seizure or as part of epilepsy, lasts longer than 5 minutes, or there are 2 shorter seizures within 5 minutes without an interim return to consciousness, emergency treatment is needed. Emergency Departments will have a protocol for treating status epilepticus.

Medication

Over-the-counter medications
over-the-counter medications, including herbal medications, should be avoided. They can affect epilepsy medication metabolism and cause higher or lower concentrations of the seizure medications in the blood. Over-the-Counter Medications and Seizures (Epilepsy Foundation) has information about what medications are considered safe for use by people with epilepsy.

Prescription medications
Carbamazepine is sometimes used when clinicians are unsure of the seizure type because it is inexpensive, relatively safe, and well-known; however, it can worsen seizures that are generalized in nature. During the first few weeks, carbamazepine "autoinduces" liver enzymes, increasing its metabolism. Carbamazepine levels that were initially effective gradually fall, resulting in seizures. Children who are on carbamazepine should not drink grapefruit juice.
Cannabidiol (CBD oil), medical marijuana, and Epidiolex
The use of CBD oil is an evolving area with new information arising frequently. Currently, there is evidence that CBD may be helpful in certain kinds of epilepsy. A purified form available as the medication Epidiolex is now available for the treatment of epilepsy in individuals with Lennox-Gastaut, tuberous sclerosis and Dravet syndromes, and other clinical trials are in progress. Some children experience significant side effects (drowsiness, malaise, elevated transaminases, nausea, diarrhea) and interactions with other epilepsy medications. There is no evidence at this time that medical marijuana is helpful for children with epilepsy. For more information, see CBD for Neurologic Conditions in Children.

Stopping medication
It is common practice to taper medication after a child has been seizure free for some interval although experts disagree whether this time period should be 18 months, 2 years, or more. An abnormal EEG increases the risk of recurrence of seizures. [Gloss: 2021]
If the patient has been on the medication for a long time and the goal is to stop medication, the dose should be decreased over a few weeks to months before finally stopping the medication. There is no data about the exact way to taper. [Ayuga: 2020] Seizure recurrence is most likely in the first few months after withdrawal and for up to 6 months. Remind the family of seizure precautions during this time (e.g., extra care when in the water, climbing, etc.), and document this in the chart. (See Safety Precautions for Children with Seizures.)
As risk for recurrence of seizures depends on many factors, including type of epilepsy, cause of epilepsy, family history of epilepsy, presence of intellectual disability and many more, consultation with a pediatric neurologist is recommended. [Beghi: 2013]

Learning/Education/Schools

All children with epilepsy should have a school health plan in place including a Sample Seizure Action Plan (University of Utah) (PDF Document 67 KB) that gives instructions for what to do if that child has a seizure. For children with frequent seizures, nasal midazolam or rectal diazaepam may be prescribed so the child can have it available at school. Education of teachers and other students about epilepsy may be very helpful to enhance acceptance of the child whose seizures aren’t completely controlled and to teach how to best respond if a seizure occurs.

School performance should be monitored at all medical home visits. Learning may be affected by whatever is causing or treating seizures. ASMs may cause learning problems and also fatigue that impairs school performance. Frequent seizures interrupt learning and social functioning. Children with epilepsy will often need to have a 504 plan that specifies needed accommodations. Children who are doing poorly in school may benefit from IQ and achievement testing by child psychology or neuropsychology. See School Accommodations: IEPs & 504s for guidance in communicating with teachers and school personnel to ensure that patients receive appropriate education and school-related services.

Maturation/Sexual/Reproductive

There are several issues in reproductive medicine that need to be followed or managed in some children with seizures. Phenytoin, particularly, can cause excess hair growth that might be confused with precocious puberty. Many of the older drugs increase the metabolism of oral contraceptives, decreasing their efficacy. If ASMs and oral contraceptives are to be used concurrently, the possibility of drug interactions needs to be addressed.

Some seizure medications, such as phenytoin, have been associated with fetal anticonvulsant syndrome, which includes minor facial anomalies that become less obvious as the child matures. [Tomson: 2005] Major anomalies (e.g., cardiac defects, cleft lip/palate, microcephaly) may also be increased when ASMs are taken by the mother. Valproic acid and carbamazepine have been associated with an increased risk of neural tube defects. Valproic acid is also associated with other teratogenic effects and best avoided when possible in girls who may become pregnant. [French: 2007]

Mental Health

Even typically developing children with epilepsy are known to demonstrate an increased incidence of mood disorders. Children with some of the epilepsy syndromes might have associated intellectual disability and demonstrate behaviors that are difficult for parents and teachers. If these problems are noted, a referral to child psychiatry and/or child psychology for medications and/or counseling might be helpful.

Nutrition/Growth/Bone

ASMs, especially valproic acid, have been associated with decreased bone density and fractures. Bone density (by Dexa scan) should be measured as a baseline and at periodic intervals (not more than yearly). If found to be low, a referral to endocrinology should be considered. When starting medications, Calcium and Vitamin D) intake should be optimized.
The ketogenic diet is a very controlled low-carbohydrate, high-fat, and high-protein diet. It suppresses seizures by causing changes in brain metabolism, although the nature of those changes is not well understood. As well as being difficult to maintain, the ketogenic diet has potentially harmful side effects. Close following of nutritional status, growth, metabolic labs, and seizures is essential for the safe use of this method. Nonetheless, it may be a good alternative for patients with difficult to control seizures. See the Ketogenic Diet for more details.

Services & Referrals

Pediatric Neurology (see NV providers [5])
Diagnosis and treatment of some seizure types, such as childhood absence epilepsy, are straightforward, but the family might benefit from a single consultation to confirm the diagnosis. Children with some of the mixed seizure type epilepsy syndromes will usually need concurrent care by pediatric neurology, depending on the comfort of the medical home clinician. Depending on the seizure type and child's response to medication, the spectrum of involvement with neurology may range from a one-time visit to concurrent care.
Medical Genetics (see NV providers [5])
A consult with genetics may be helpful if a genetic or metabolic basis for the seizures is being considered.
Medical Imaging (see NV providers [0])
Although brain imaging is available in most hospitals, most small children need sedation for brain MRIs and may need referral to a pediatric hospital. MRI is often part of the initial management of the child presenting with seizures and, in most cases, will not need to be repeated unless seizures change in quality or frequency.
Electroencephalography (EEG) (see NV providers [1])
EEG, overnight video EEG, or ambulatory monitoring (when available) will sometimes need to be repeated after the initial evaluation if seizures are proving difficult to control. An EEG is also sometimes performed when the patient has been seizure-free on medication for a few years and stopping the medication is being considered.
Sleep Studies/Polysomnography (see NV providers [0])
Sleep studies may be helpful for the child with epilepsy and sleep problems and may be ordered with concurrent EEG if seizures during sleep are suspected.
Mental Health Evaluation/Assessment (see NV providers [10])
Refer for evaluation and psychometric testing, including IQ and achievement testing, as needed.
Neuropsychiatry/Neuropsychology (see NV providers [5])
In a child with a more complicated clinical picture, a full neuropyschological profile may be warranted.
General Counseling Services (see NV providers [209])
Evaluation and management of mood disorders in children with seizures.
Psychiatry/Medication Management (see NV providers [49])
Evaluation for and treatment of behavior problems and mood disorders is important in children with epilepsy. Although many medical home clinicians may feel comfortable prescribing medications for uncomplicated attention problems and depression, issues surrounding these diagnoses and medications are more complicated in children with seizures on medications.
Pediatric Endocrinology (see NV providers [6])
Endocrinology may be helpful if precocious puberty is suspected and for possible medical treatment of low bone density may be helpful.
Bone Densitometry/DEXA (see NV providers [0])
In a child on valproic acid, periodic reevaluation of bone density may be needed.

ICD-10 Coding

  • R56.xx, Convulsions
  • G40.xxx, Epilepsy
ICD-10 uses 2 general classifications for seizure disorders. The R56 series is for convulsions (which may or may not be epileptic seizures), certain kinds of seizures (e.g., febrile seizures), or seizures not otherwise specified. The G40 series is for epilepsy and epileptic syndromes. The x indicates additional digits that are required for billing. For more specific codes, see Coding for Convulsions (icd10data.com) and Coding for Epilepsy (icd10data.com).

Resources

Information & Support

Related Portal Content
The Medical Home Portal provides information about some specific seizure syndromes and general diagnositic and management information, including: Answers to questions that families may frequently ask can be found at: The Care Notebook may also be helpful for tracking seizure triggers, hisotory, medical test results, and medical records.

For Professionals

Epilepsy Guidelines (NICE)
Guidance documents for the diagnosis and management of epilepsy in children; National Institute for Health and Clinical Excellence (National Health Service, UK).

For Parents and Patients

Epilepsy Foundation
A national organization that provides information about epilepsy; programs to improve epilepsy treatment; materials to assist in helping people with epilepsy find jobs; activities in schools to educate the public; activities to educate policymakers; funds for research; links to find local and state resources; and news about conferences and other items of interest.

Epilepsy (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine.

Seizures, convulsions, and epilepsy (healthychildren.org)
General information about convulsions, seizures, and epilepsy from Healthychildren.org.

Epilepsy (NINDS)
Research, prognosis, management, and trials related to epilepsy; National Institutes of Neurological Disorders & Stroke.

Patient Education

Let's Talk About... Seizures (Intermountain Healthcare)
Brief, 4-page fact sheet about seizures with information about types of seizures, safety during a seizure, and treatment; Primary Children's Hospital, Intermountain Healthcare.

Tools

Sample Seizure Action Plan (University of Utah) (PDF Document 67 KB)
One example of a seizure action plan to be written and discussed with parents of children with seizures before they leave the office or emergency department; University of Utah Pediatric Neurology Division.

Seizure Tracker (SeizureTracker.com)
Easy-to-use tool that allows patients to create personalized reports of logged seizure activity and treatment history that can be easily shared with their medical team -free sign-up required.

Seizure Diary (PDF Document 75 KB)
A convenient form for families to use to record seizure events; Medical Home Portal.

Services for Patients & Families in Nevada (NV)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Studies

Seizures (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Epilepsy (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Helpful Articles

PubMed search for review articles in the last year about seizures or epilepsy in children or adolescents

Aaberg KM, Surén P, Søraas CL, Bakken IJ, Lossius MI, Stoltenberg C, Chin R.
Seizures, syndromes, and etiologies in childhood epilepsy: The International League Against Epilepsy 1981, 1989, and 2017 classifications used in a population-based cohort.
Epilepsia. 2017;58(11):1880-1891. PubMed abstract

Fine A, Wirrell EC.
Seizures in Children.
Pediatr Rev. 2020;41(7):321-347. PubMed abstract

Tenney JR.
Epilepsy-Work-Up and Management in Children.
Semin Neurol. 2020;40(6):638-646. PubMed abstract

Symonds JD, Elliott KS, Shetty J, Armstrong M, Brunklaus A, Cutcutache I, Diver LA, Dorris L, Gardiner S, Jollands A, Joss S, Kirkpatrick M, McLellan A, MacLeod S, O'Regan M, Page M, Pilley E, Pilz DT, Stephen E, Stewart K, Ashrafian H, Knight JC, Zuberi SM.
Early childhood epilepsies: epidemiology, classification, aetiology, and socio-economic determinants.
Brain. 2021;144(9):2879-2891. PubMed abstract / Full Text

Wirrell E.
Infantile, Childhood, and Adolescent Epilepsies.
Continuum (Minneap Minn). 2016;22(1 Epilepsy):60-93. PubMed abstract

Authors & Reviewers

Initial publication: April 2013; last update/revision: December 2022
Current Authors and Reviewers:
Author: Lynne M. Kerr, MD, PhD
Reviewer: Cristina Corina Trandafir, MD, PhD
Authoring history
2019: update: Lynne M. Kerr, MD, PhDA
2018: update: Lynne M. Kerr, MD, PhDA
2013: first version: Matthew Sweney, MDA; Denise Morita, MDA
AAuthor; CAContributing Author; SASenior Author; RReviewer

Page Bibliography

Aaberg KM, Gunnes N, Bakken IJ, Lund Søraas C, Berntsen A, Magnus P, Lossius MI, Stoltenberg C, Chin R, Surén P.
Incidence and Prevalence of Childhood Epilepsy: A Nationwide Cohort Study.
Pediatrics. 2017;139(5). PubMed abstract

Ayuga Loro F, Gisbert Tijeras E, Brigo F.
Rapid versus slow withdrawal of antiepileptic drugs.
Cochrane Database Syst Rev. 2020;1(1):CD005003. PubMed abstract / Full Text

Beghi E, Giussani G, Grosso S, Iudice A, La Neve A, Pisani F, Specchio LM, Verrotti A, Capovilla G, Michelucci R, Zaccara G.
Withdrawal of antiepileptic drugs: guidelines of the Italian League Against Epilepsy.
Epilepsia. 2013;54 Suppl 7:2-12. PubMed abstract

Benbadis, SR.
Differential diagnosis of epilepsy.
Continuum Lifelong Learning Neurol . 2007;13(4):48-70.

Berg AT, Testa FM, Levy SR, Shinnar S.
Neuroimaging in children with newly diagnosed epilepsy: A community-based study.
Pediatrics. 2000;106(3):527-32. PubMed abstract

Conway L, Widjaja E, Smith ML.
Impact of resective epilepsy surgery on health-related quality of life in children with and without low intellectual ability.
Epilepsy Behav. 2018;83:131-136. PubMed abstract

French, J.
Treatment with antiepileptic drugs, new and old.
Continuum Lifelong Learning Neurol . 2007;13(4):71-90.

Gaillard WD, Chiron C, Helen Cross J, Simon Harvey A, Kuzniecky R, Hertz-Pannier L, Gilbert Vezina L.
Guidelines for imaging infants and children with recent-onset epilepsy.
Epilepsia. 2009. PubMed abstract

Gloss D, Pargeon K, Pack A, Varma J, French JA, Tolchin B, Dlugos DJ, Mikati MA, Harden C.
Antiseizure Medication Withdrawal in Seizure-Free Patients: Practice Advisory Update Summary: Report of the AAN Guideline Subcommittee.
Neurology. 2021;97(23):1072-1081. PubMed abstract

Hirtz D, Ashwal S, Berg A, Bettis D, Camfield C, Camfield P, Crumrine P, Elterman R, Schneider S, Shinnar S.
Practice parameter: evaluating a first nonfebrile seizure in children: report of the quality standards subcommittee of the American Academy of Neurology, The Child Neurology Society, and The American Epilepsy Society.
Neurology. 2000;55(5):616-23. PubMed abstract
Recommendations are based on a three-tiered scheme of classification of evidence found in literature review.

Hughes JR.
The photoparoxysmal response: the probable cause of attacks during video games.
Clin EEG Neurosci. 2008;39(1):1-7. PubMed abstract

Kanner AM, Ashman E, Gloss D, Harden C, Bourgeois B, Bautista JF, Abou-Khalil B, Burakgazi-Dalkilic E, Llanas Park E, Stern J, Hirtz D, Nespeca M, Gidal B, Faught E, French J.
Practice guideline update summary: Efficacy and tolerability of the new antiepileptic drugs I: Treatment of new-onset epilepsy: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society.
Neurology. 2018;91(2):74-81. PubMed abstract

Kanner AM, Ashman E, Gloss D, Harden C, Bourgeois B, Bautista JF, Abou-Khalil B, Burakgazi-Dalkilic E, Llanas Park E, Stern J, Hirtz D, Nespeca M, Gidal B, Faught E, French J.
Practice guideline update summary: Efficacy and tolerability of the new antiepileptic drugs II: Treatment-resistant epilepsy: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society.
Neurology. 2018;91(2):82-90. PubMed abstract

Langfitt JT, Holloway RG, McDermott MP, Messing S, Sarosky K, Berg AT, Spencer SS, Vickrey BG, Sperling MR, Bazil CW, Shinnar S.
Health care costs decline after successful epilepsy surgery.
Neurology. 2007;68(16):1290-8. PubMed abstract

Meeraus WH, Petersen I, Chin RF, Knott F, Gilbert R.
Childhood epilepsy recorded in primary care in the UK.
Arch Dis Child. 2013;98(3):195-202. PubMed abstract

National Center for Chronic Disease Prevention and Health Promotion, Division of Population Health.
Epilepsy Data and Statistics.
Centers for Disease Control and Prevention; (2018) https://www.cdc.gov/epilepsy/data/index.html. Accessed on 11/2/18.

Ritter DM, Holland K.
Genetic Testing in Epilepsy.
Semin Neurol. 2020;40(6):730-738. PubMed abstract

Scheffer IE, Harkin LA, Dibbens LM, et al.
Neonatal epilepsy syndromes and generalized epilepsy with febrile seizures plus (GEFS).
Epilepsia. 2005;46(sup 10):41-47.
A description of the generalized epilepsy with febrile seizures plus syndrome.

Sharma S, Riviello JJ, Harper MB, Baskin MN.
The role of emergent neuroimaging in children with new-onset afebrile seizures.
Pediatrics. 2003;111(1):1-5. PubMed abstract

Starnes K, Miller K, Wong-Kisiel L, Lundstrom BN.
A Review of Neurostimulation for Epilepsy in Pediatrics.
Brain Sci. 2019;9(10). PubMed abstract / Full Text

Striano P, Minassian BA.
From Genetic Testing to Precision Medicine in Epilepsy.
Neurotherapeutics. 2020;17(2):609-615. PubMed abstract / Full Text

Symonds JD, McTague A.
Epilepsy and developmental disorders: Next generation sequencing in the clinic.
Eur J Paediatr Neurol. 2020;24:15-23. PubMed abstract

Tomson, T and Battino, D.
Teratogenicity of antiepileptic drugs: state of the art.
Curr Opin Neurol. 2005;18(2):135-140.