cbd oil for use with kids with begnin rolandic epilepsy

Cbd oil for use with kids with begnin rolandic epilepsy

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Journal of Neurology Research, ISSN 1923-2845 print, 1923-2853 online, Open Access
Article copyright, the authors; Journal compilation copyright, J Neurol Res and Elmer Press Inc
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Volume 10, Number 6, December 2020, pages 245-247

Successful Treatment of Super-Refractory Status Epilepticus With Cannabis Oil in a Patient With Neuronal Ceroid Lipofuscinosis

Athena Michaelides a, b , Spyridon Bekas a , Antigoni Papaioannou a , Athina Lazaridou a , Paola Nicolaides a

a University of Nicosia Medical School, Engomi 2408, Cyprus
b Corresponding Author: Athena Michaelides, University of Nicosia Medical School, Engomi 2408, Cyprus

Manuscript submitted August 11, 2020, accepted November 19, 2020, published online December 9, 2020
Short title: Treatment of Status Epilepticus With Cannabis Oil
doi: https://doi.org/10.14740/jnr626

Abstract ▴Top

Herein we describe a case of a 25-year-old man diagnosed with the “variant late infantile-onset” neuronal ceroid lipofuscinosis (NCL) who has a novel mutation in the CLN6 gene located on chromosome 15. The patient developed seizures at the age of 10 years along with progressive symptoms of ataxia, spasticity, cognitive decline and visual difficulties. At the age of 25 years, the seizures were drug-resistant, and the patient was put in an anesthesia-induced coma until the use of cannabis oil in combination with Food and Drug Administration (FDA)-approved anti-seizure drugs proved to be lifesaving. Treatment for NCL currently consists of symptomatic relief of seizures, and supportive therapies for associated symptoms of behavior, language and visual difficulties. Although limited, recent data on the efficacy of cannabinoids for treatment-resistant epilepsy have been published. Since cannabis oil is not currently FDA approved for most formulations, its use in drug-resistant epilepsy is anecdotal and remains highly controversial.

Keywords: Epilepsy; Drug-resistant seizure; Neuronal ceroid lipofuscinosis; CLN6

Introduction ▴Top

Neuronal ceroid lipofuscinosis (NCL) is a group of genetically inherited neurodegenerative disorders. There are 14 genetically distinct types that have been identified and are classified as CLN1 to CLN14. Most NCLs have an autosomal recessive pattern of inheritance and share clinical characteristics. The childhood types are more common and manifest as progressive vision loss, epileptic seizures, mental and motor deterioration, and premature death [ 1 ].

The management of NCL is challenging, and often requires different treatment regimens for the range of presenting symptoms. A prominent feature reported across the literature is epilepsy [ 2 – 5 ]. Since different anti-seizure drugs are not always beneficial in reducing seizures, an alternative treatment that has recently been recognized to be efficacious is cannabis oil in differing ratios of cannabidiol (CBD) and tetrahydrocannabinol (THC) [ 6 , 7 ]. Apart from Epidiolex (purified form of nearly 100% CBD), cannabis oil is not currently Food and Drug Administration (FDA) approved, so its use is controversial [ 6 ].

Case Report ▴Top

We describe a case of a 25-year-old man, who presented with drug-resistant epilepsy due to variant late infantile neuronal ceroid lipofuscinosis (vLINCL).

The patient described is the third son of healthy non-consanguineous Cypriot parents with no known family history of neurological disease. He was born following a full-term normal delivery and reached his early developmental milestone. There were no concerns until the age of 8 years when he developed mild learning difficulties thought to be related to impaired memory and concentration. A diagnosis of attention deficit hyperactivity disorder (ADHD) was made, and methylphenidate (ritalin) was prescribed.

At the age of 10 years, he developed his first focal motor seizure. A few months later, he had a second brief right-sided focal motor seizure with an electroencephalogram (EEG) pattern suggestive of benign childhood epilepsy with centrotemporal spikes (BCECTS), also known as benign rolandic epilepsy. At that point, ritalin was withdrawn and sodium valproate (depakine) was added.

Over the course of the year, he developed a progressive loss of motor skills and coordination – he experienced frequent falls, increasing difficulty with walking and climbing stairs, tremor and ataxia. His speech became slower and dysarthric. A brain magnetic resonance imaging (MRI) showed moderate dilation of the ventricles and extra-axial cerebrospinal fluid (CSF) spaces with minimal periventricular hyper intensities. The corpus collosum, brain stem and cervical spinal cord appeared normal. Genetic testing for spinocerebellar ataxia (SCA) excluded a diagnosis of SCA types 1, 2, 3, 6, 7, 8, 12 and 17, as well as dentatorubral-pallidoluysian atrophy (DRPLA).

His symptoms were progressive still and at the age of 14 years he was found to have proximal muscle weakness in the upper and lower limbs, and increased tone in the lower limbs with brisk reflexes and ankle clonus. He had a spastic gait ataxia with early development of scoliosis and some asymmetry at the pelvis. He also had obvious dysarthria with frequent choking episodes. On ophthalmic examination, he had failure of binocular convergence and nystagmus that was elicited on lateral gaze. Repeat MRI showed diffuse hypomyelination in the cerebrum in conjunction with cerebellar atrophy. The thalamus and globus pallidi were not thought to be atrophic.

His seizures continued to progress and remained drug-resistant requiring the use of a number of anti-seizure medications including a combination of levetiracetam, lamotrigine, lacosamide and piracetam. At the age of 22 years, genetic testing confirmed two novel variations in the CLN6 gene: a c.407G>A in exon 4 and a c.884 A>G in exon 7 resulting in the p. Arg136His and p. Tyr295Cys amino acid changes at the protein level.

The above variations were not listed in either the CLN6 gene mutation database or single nucleotide polymorphism (SNP) databases. Upon genetic testing of both parents and brothers, only the mother was found to be a carrier of the CLN6 gene c407G>A mutation with a 50% chance of transmitting the mutation to her offspring. The c.407G>A mutation was thus inherited from the mother and the c.884A>G variation appeared de novo in the proband.

No curative treatments exist for the NCLs, so despite a formal diagnosis of vLINCL, no definitive treatment could be administered. The seizures progressed to super-refractory status epilepticus (SRSE) resistant to phenobarbital, clobazam, sodium valproate, phenytoin, levetiracetam and zonisamide. The patient was admitted to the intensive care unit (ICU) and put in an anesthesia-induced coma using midazolam and propofol and remained so for a period of several weeks. Any attempt to reduce or reverse the anesthesia-induced coma resulted in the re-emergence of status epilepticus. At this point, a trial of cannabis oil was initiated with improvement in the clinical and electrographic seizures. Over the following 2 weeks, he was trialled on a combined form of CBD and THC. A significant reduction in epileptic seizures was observed within a few days of adding the CBD/THC combination. Following a further increase and after 50 days of being in the induced coma, the sedation medication was withdrawn completely, and the patient opened his eyes following a week without epileptic episodes. The patient was discharged home 4 weeks following a reduction of the anti-seizure drugs and daily intake of CBD/THC.

Currently 8 months on, the patient experiences a significantly reduced number of seizures. He has come off clobazam and zonizamide but continues taking the cannabinoid oil drop combination in addition to low dose phenobarbitone, sodium valproate and levetiracetam.

Discussion ▴Top

The NCLs are caused by a number of CLN gene mutations. These genes encode proteins that are involved in the secretory and/or endo/lysosomal pathways [ 8 , 9 ]. When these genes are mutated, auto-fluorescent lipopigments accumulate in various tissues contributing to the signs and symptoms seen in NCL [ 9 ].

CLN6 encodes an endoplasmic reticulum (ER) membrane protein [ 9 ]. The CLN6 mutation described in the case occurs on chromosome 15q21-23 on gene CLN6 [ 8 ].

Spectrum and symptoms

Different types of NCLs are described based on the ultrastructure of membrane-bound inclusions, genetic molecular defect and clinical phenotype [ 10 ]. Compared to the classical forms, the age of onset in vLINCL tends to be later with symptoms presenting as late as 6 years of age. Seizures, ataxia, irritability and progressive mental deterioration present early on. Loss of speech occurs at around 3 years, visual impairment at 4 years and loss of motor skills between 4 and 10 years [ 10 ]. The rate of disease progression may vary, but usually leads to severe disability by mid-adolescence and death by the end of the second decade in life [ 4 , 5 , 9 ].

The CLN6 variant of vLINCL was first identified in 2002 in Costa Rican and Venezuelen patients [ 9 ]. Since then, other cases have been reported that describe a disease course and progression similar to our case. Sun et al reported the first case of a CLN6 mutation in China – a male patient who initially presented with language articulation problems and uncoordinated movements from age 4 which went unrecognized until the patient had repeated seizure episodes [ 2 ]. Sato et al reported a male patient from Japan diagnosed with moderate mental retardation and hyperactivity disorder by the age of 6 years. Epilepsy followed, along with weakness, ataxia, and MRI findings of atrophy. Genetic testing at the age of 12 years revealed a heterozygous mutation in the CLN6 gene [ 3 ]. Al-Muhaizea et al reported four cases across three families in Saudi Arabia where a similar disease course was reported: signs of language and behavior regression between the ages of 2 and 4 years followed by gait deterioration, ataxia, seizures and brain atrophy at around 6 years of age [ 4 ]. Chin et al reported similar findings due to novel CLN6 mutations found in two patients of Caucasian and mixed native American/Northern European descent, respectively [ 5 ]. The cases describe a consistent pattern of disease progression; however, a differentiating feature amongst the reported cases is the presence of visual impairment – although it is described amongst the typical features of vLINCL, it only presents as a feature of the disease in certain cases [ 4 ].

Treatment for NCL due to a CLN6 mutation currently consists of symptomatic relief of seizures, and supportive therapies for associated symptoms of behavior, language and visual difficulties.

Although limited, recent data on the efficacy of cannabinoids for treatment-resistant epilepsy have been published. Hausman-Kedem et al prospectively investigated the use of CBD/THC (ratio 20:1) in children and adolescents aged 1 – 20 years with drug-resistant epilepsy to at least four anti-seizure drugs, a ketogenic diet and vagal nerve stimulation. A significant reduction in mean monthly seizure frequency was noted with a higher CBD dose and patient age < 10 years at treatment-onset being associated with a better outcome. The most significant adverse event recorded was somnolence which led to cessation in some cases [ 6 ]. Porcari et al conducted a retrospective study that analyzed seizure frequency after the addition of CBD to anti-seizure drugs in treatment-resistant epilepsy in a cohort aged < 18 years. Results showed a significant reduction in overall seizure frequency. Although no patients had monotherapy with CBD, weaning of other anti-seizure drugs was reported as an achievable outcome [ 7 ].

The mechanism of cannabis in treating epilepsy remains unclear, and except for Epidiolex, FDA approval for most formulations has not yet been achieved. This forces acquisition of the drug through marijuana dispensaries which creates discrepancies in dosing and CBD/THC ratios [ 6 ].

Recent developments for the management of drug-resistant epilepsy report on the use of cannabis oil in combination with anti-seizure drugs. Since cannabis oil is not currently FDA approved other than for specific epilepsy syndromes (Dravet and Lennox Gastuax), its use in drug-resistant epilepsy is anecdotal and remains highly controversial. Although this case has shown that it is beneficial in reducing the seizures in NCL, future studies are required to test the efficacy and safety of cannabis oil as well as to define a recommended ratio of CBD/THC to be trialed in drug-resistant status epilepticus.

Acknowledgments

None to declare.

Financial Disclosure

The University of Nicosia provided funding to support the publication of this manuscript.

Conflict of Interest

None to declare.

Informed Consent

Informed consent was obtained from the patient and the patient’s family for the undertaking of this study. Informed consent was obtained from all family members who underwent investigational gene testing during the work up of the patient’s case. Informed consent was obtained from each family member at the time of testing. In addition, the patient and the patient’s family have consented to the publication of this manuscript.

Author Contributions

AM, SB, AL and AP were responsible for the data collection, writing, analysis and submission of the manuscript; PN contributed to supervising and reviewing at all stages.

Data Availability

The authors declare that data supporting the findings of this study are available within the article.

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Seizures/Epilepsy

Epilepsy is a condition in which an individual has recurrent, unprovoked seizures. While most seizure syndromes are associated with abnormal EEGs, not all abnormal EEGs are associated with seizures. The aim of seizure treatment is preventing recurrent alterations in behavior, motor activity, or consciousness that are caused by abnormal, episodic brain activity.

Status epilepticus is a common, life-threatening neurologic disorder that is 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. [Jenssen: 2006] (See Status Epilepticus.)

Other Names & Coding

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).

Prevalence

Genetics

Prognosis

  • 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 will occur 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.
    • 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.
    • 20-30% of patients will have intractable epilepsy that does not respond completely to multiple medications and/or other treatments (e.g., ketogenic diet, surgery, or vagal nerve stimulator).

    Practice Guidelines

    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

    Baumann RJ.
    Technical report: treatment of the child with simple febrile seizures.
    Pediatrics. 1999;103(6):e86. PubMed abstract

    Hirtz D, Berg A, Bettis D, Camfield C, Camfield P, Crumrine P, Gaillard WD, Schneider S, Shinnar S.
    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;60(2):166-75. PubMed abstract

    Steering Committee on Quality Improvement and Management, Subcommittee on Febrile Seizures American Academy of Pediatrics.
    Febrile seizures: clinical practice guideline for the long-term management of the child with simple febrile seizures.
    Pediatrics. 2008;121(6):1281-6. PubMed abstract

    Roles of the Medical Home

    Children with febrile seizures are usually managed by their primary care clinician. Children with uncomplicated genetic epilepsy syndromes, such as childhood absence epilepsy or benign Rolandic epilepsy, may also be managed by their primary care clinician after an initial visit to a neurologist to confirm the diagnosis. Many of the other epilepsies, including syndromes such as Lennox-Gastaut, will require concurrent care with a pediatric neurologist. A primary care clinician may wish to refer a patient to neurology when discontinuation of anti-epileptic drugs (AEDs) is being considered.

    The medical home should also assist the child and family with counseling about safety, educating others about responding to seizures (extended family, other caregivers, school teachers, and classmates, etc.), coordinating care with specialists, assessing and managing medication side effects and secondary impacts of seizures or their underlying cause, and supporting decisions regarding treatment or tapering medications.

    Clinical Assessment

    Overview

    Pearls & Alerts for Assessment

    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 frequency of flashing that is 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

    Non-epileptic seizures (NES) 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 somatiform illnesses or with long, detailed responses to a review of systems. [Benbadis: 2007] Patients in whom non-epileptic seizures are suspected 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. NES is a diagnosable disorder, not a diagnosis of exclusion, with potentially severe consequences if untreated. Most children and adolescents will improve once the correct diagnosis is made and appropriate treatment is initiated.

    Syncope is not seizures

    A syncopal event, followed by some jerking after loss of consciousness, is not considered a seizure and the cause of the jerking differs from that associated with seizures. These children do not generally need to be seen by pediatric neurology.

    Screening

    For the Condition

    For Complications

    Clinical Classification

    If there is reasonable certainty that the child has had a seizure, the next questions are why and what kind? A complete description of the event, including age of the patient and 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) ( 41 KB) adapted from [Hirtz: 2000] may be helpful.

    • Focal onset seizures (also called localized or partial seizures) have symptoms at 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 benign epilepsy syndrome, such as benign Rolandic epilepsy. 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.
    • Neonatal seizures with onset between birth and 2 months of age
      • Epilepsy syndromes include benign neonatal convulsions, benign myoclonic epilepsy of infancy, and others. Children with seizures occurring in this age group should be urgently evaluated for a provoking cause of the seizures, and if none is found, then seen by a pediatric neurologist.
      • 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 that is described further in [Scheffer: 2005].
      • Benign myoclonic seizures – generally benign
      • Early infantile epileptic encephalopathy and early myoclonic epilepsy – usually severe with very poor prognosis (Dravet syndrome)
      • Infantile Spasms – usually severe with very poor prognosis
      • Lennox-Gastaut Syndrome – usually severe with very poor prognosis.
      • The majority of children in this group have genetic epilepsies that carry a good prognosis.
      • Childhood Absence Epilepsy
      • Benign Rolandic epilepsy (BRE) or Benign Epilepsy with Centrotemporal Spikes (BECTS) are focal onset seizures of the face and arm, occur mostly at night, often familial, and often not treated with AEDs .
      • 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.
      • 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.
      • Juvenile absence epilepsy (JAE)
      • Juvenile Myoclonic Epilepsy (JME))

      Differential Diagnosis

      Common events confused with seizures are syncope, breath-holding spells, and movement disorders such as tics and stereotypies. See Differential Diagnosis of Paroxysmal Events. The clinical history of the event(s) is the most useful information in arriving at the diagnosis, but 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 ( 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 Activity Restrictions in Children with Seizures) 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.

      Medical Conditions Causing Condition

      Comorbid & Secondary Conditions

      History & Examination

      Current & Past Medical History

      Head trauma is an uncommon cause of seizures but an important diagnosis to consider in the acute setting because subdural or epidural hemorrhage can be life-threatening. Brain tumors are an even less common cause of seizures and also may present with behavior or personality change and vomiting (particularly early morning). What is the child’s basic state of health? Illness, sleep-deprivation, alcohol and certain medications and illegal substances may lower the seizure threshold.

      • Precipitating events
        • Head trauma, conditions that cause abrupt electrolyte changes (gastroenteritis, diabetes), febrile illness
        • Behavior or mood change or an aura minutes before a seizure may be a symptom to a focal onset.
        • 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
        • Change in breathing pattern, cessation of breathing, cyanosis
        • Amnesia for events, confusion, lethargy, sleepiness, headaches, and muscle aches
        • Transient focal weakness (Todd’s paralysis), nausea/vomiting, bitten tongue

        Family History

        Pregnancy/Perinatal History

        Developmental & Educational Progress

        Developmental screening should be performed for young children, and IQ and school performance assessment should be considered in older children. Developmental delays may be a manifestation of an underlying condition. A decrease in school performance may be due to undiagnosed seizures, especially absence seizures. Mood disorders and attention problems are common in children with epilepsy.

        Developmental delays or a decrease in school performance may be due to increased seizures, including seizures not clinically apparent (such as absence seizures), side effects of AEDs, the presence of a neurodegenerative disorder, the presence of psychosocial stressors, or the presence of a mental health disorder.

        Maturational Progress

        Social & Family Functioning

        Physical Exam

        General
        Growth Parameters
        HEENT/Oral
        Neurologic Exam

        Testing

        An EEG is performed usually on an outpatient basis 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.

        EEGs should not be used in the diagnosis of 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.

        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]

        A follow-up EEG may be helpful when seizures change in character or frequency or stop responding to a previously effective AED. 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

        Imaging

        • Seizure with focal onset
        • Seizures in a newborn or young infant
        • Status epilepticus at any age
        • Focal abnormality on EEG

        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

        Other Testing

        Specialty Collaborations & Other Services
        Pediatric Neurology ( see NW providers [0] )

        Depending on the comfort of the medical home clinician, a visit to pediatric neurology to confirm the diagnosis and evaluate further may be helpful. Depending on the seizure type, the spectrum of involvement with neurology may range from a one-time visit to concurrent care. Depending on the clinical circumstances, refer to a pediatric neurologist for diagnosis, occasional follow-ups, or concurrent management.

        Medical Genetics ( see NW providers [1] )

        A consult with genetics may be helpful if a genetic or metabolic basis for the seizures is being considered.

        Medical Imaging ( see NW 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 NW providers [0] )

        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 NW 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.

        Treatment & Management

        Overview

        Pearls & Alerts for Treatment & Management

        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 when 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. See the Let’s Talk About. Seizures (Intermountain Healthcare) for more information.

        Seizure action plans

        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) ( 67 KB) for an example.

        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. Rescue drugs may include nasal midazolam and rectal valium (Diastat). Nasal midazolam 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.

        Drug interactions and AEDs

        Children on carbamazepine should avoid macrolide antibiotics and grapefruit juice because this slows metabolism of the medication. Oral contraceptives may interfere with AED efficacy and vice versa. See [Perucca: 2006] for more information.

        Consider possible pregnancy when choosing medication

        Certain anti-epileptic drugs (AEDs) 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 AEDs 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.

        New treatment on the horizon

        Over the next few years, the responsive neurostimulation (RNS) system will likely be used more often. RNS involves a neurostimulator that is 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 US as adjunctive therapy for medically resistant focal onset epilepsy. See Responsive Neurostimulation (Epilepsy Foundation).

        New medication for children with Dravet and Lennox Gastaut syndromes

        Epidiolex is a new, FDA-approved prescription cannabidiol for the treatment of seizures associated with Lennox-Gastaut syndrome (LGS) or Dravet syndrome. It is structurally different from other antiepileptic medications and offers hope for individuals with these 2 difficult to control epilepsy syndromes. For more information, see CBD for Neurologic Conditions in Children.

        How should common problems be managed differently in children with Seizures/Epilepsy?

        Development (Cognitive, Motor, Language, Social-Emotional)

        Over the Counter Medications

        Prescription Medications

        Systems

        Neurology

        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 benign Rolandic epilepsy.

        End of Visit Instructions (After Visit Summaries), including a seizure action plan, should be given to all families in a child with epilepsy. These should include seizure precautions and what to do if there is a seizure. See Evaluation and Treatment of a First Unprovoked Seizure.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 first choice for generalized seizures. Instead, evidence-based medicine suggests they may be treated with ethosuximide, valproic acid, or lamotrigine.

        • 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, also 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 the majority of 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.

        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. See Infantile Spasms, Treatment & Management.

        Children with intractable seizures may have one of the epilepsy syndromes that are very difficult to manage. These include Dravet and Lennox-Gastaut Syndrome and some of the partial epilepsies. Children with refractory epilepsy may be referred to an epilepsy center for management with multiple AEDs, implantation of a Vagus Nerve Stimulator (VNS), 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 AEDs. ([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)

        Cannabidiol (CBD oil) and medical marijuana
        The use of CBD oil is an evolving area with new information arising frequently. Currently, there is some 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 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.

        Stopping medication
        After a child has been seizure free for 2 years, he or she may be able to stop taking anti-epileptic medication. For information about when and how to stop AEDs, see Tapering Antiepileptic Medication.

        Specialty Collaborations & Other Services
        Pediatric Neurology ( see NW providers [0] )

        When, and how often, to consult a pediatric neurologist will depend on the seizure type and the child’s response to medication. 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.

        Learning/Education/Schools

        All children with epilepsy should have a school health plan in place including a Sample Seizure Action Plan (University of Utah) ( 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. AEDs cause may not only problems in learning but 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.

        • Educational Testing/Assessment ( see NW providers [0] )
        • Education About Disabilities/Diagnoses ( see NW providers [45] )
        Specialty Collaborations & Other Services
        Mental Health Evaluation/Assessment ( see NW providers [0] )

        Refer for evaluation and psychometric testing, including IQ and achievement testing, as needed.

        Neuropsychiatry/Neuropsychology ( see NW providers [0] )

        In a child with a more complicated clinical picture, a full neuropyschological profile may be warranted.

        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 AEDs 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 AEDs 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]

        Specialty Collaborations & Other Services
        Gynecology: Pediatric/Adolescent; Special Needs ( see NW providers [0] )

        Providers who offer gynecological care for girls with special needs.

        Pediatric Endocrinology ( see NW providers [1] )

        Endocrinology may be helpful if precocious puberty is suspected.

        Mental Health/Behavior

        Specialty Collaborations & Other Services
        General Counseling Services ( see NW providers [1] )

        Evaluation and management of mood disorders in children with seizures.

        Psychiatry/Medication Management ( see NW providers [0] )

        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.

        Nutrition/Growth/Bone

        Specialty Collaborations & Other Services
        Pediatric Endocrinology ( see NW providers [1] )

        Consultation with endocrinology for possible medical treatment of low bone density may be helpful.

        Bone Densitometry/DEXA ( see NW providers [0] )

        In a child on valproic acid, periodic reevaluation of bone density may be needed.

        Issues Related to Seizures/Epilepsy

        Neurology

        Ask the Specialist

        What are alternatives to medication for seizures?

        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, responsive neurostimulation, and cannabidiol (CBD) oil. 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 80% of patients; these alternative and well-studied treatments have been successful additions in helping children achieve seizure control.

        Should I consider recommending a ketogenic diet for my patient?

        The ketogenic diet is a very controlled low carbohydrate, high fat, and high protein diet. It probably suppresses seizures by causing changes in brain metabolism. 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 of controlling seizures. Nonetheless, it may be a good alternative for patients with difficult to control seizures. See the Ketogenic Diet for more details.

        Resources for Clinicians

        On the Web

        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).

        Helpful Articles

        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

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

        Clinical Tools

        Care, Action, & Self-Care Plans

        Sample Seizure Action Plan (University of Utah) ( 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.

        Questionnaires/Diaries/Data Tools

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

        Patient Education & Instructions

        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.

        Resources for Patients & Families

        Information on the Web

        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.nih.gov)
        Detailed information about epilepsy and treatment from the NIH.

        National & Local Support

        Studies/Registries

        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.

        Services for Patients & Families Nationwide (NW)

        Service Categories # of providers* in: NW Partner states (5)  (show) MT NM NV RI UT
        Bone Densitometry/DEXA
        Education About Disabilities/Diagnoses 45 48 75 75 53 87
        Educational Testing/Assessment 6 9 8
        Electroencephalography (EEG) 2
        General Counseling Services 1 147 41 207 31 368
        Gynecology: Pediatric/Adolescent; Special Needs 3 3 13
        Medical Genetics 1 8 4 4 4 6
        Medical Imaging 1 4
        Mental Health Evaluation/Assessment 14 17 14 13 146
        Neuropsychiatry/Neuropsychology 3 5 7 10
        Pediatric Endocrinology 1 14 1 6 13 3
        Pediatric Neurology 15 5 15 5
        Psychiatry/Medication Management 19 52 78 57
        Sleep Studies/Polysomnography 5 1 7

        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.

        Authors & Reviewers

        Current Authors and Reviewers:

        Author: Lynne M. Kerr, MD, PhD
        2018: update: Lynne M. Kerr, MD, PhD A
        2013: first version: Matthew Sweney, MD A ; Denise Morita, MD A

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        Pediatrics. 2017;139(5). PubMed abstract

        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

        Baumann RJ.
        Technical report: treatment of the child with simple febrile seizures.
        Pediatrics. 1999;103(6):e86. PubMed abstract
        This technical report provides in-depth information on the studies used to form the guideline recommendations. A complete bibliography is included as well as evidence tables that summarize data extracted from scientific studies. This report also provides pertinent evidence on the individual therapeutic agents studied including study results and dosing information. Readers of the clinical practice guideline are urged to review the technical report to enhance the evidence-based decision-making process.

        Benbadis, SR.
        Differential diagnosis of epilepsy.
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        Berg AT, Testa FM, Levy SR, Shinnar S.
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        Pediatrics. 2000;106(3):527-32. PubMed abstract

        Butler KM, da Silva C, Alexander JJ, Hegde M, Escayg A.
        Diagnostic Yield From 339 Epilepsy Patients Screened on a Clinical Gene Panel.
        Pediatr Neurol. 2017;77:61-66. PubMed abstract

        Conway L, Widjaja E, Smith ML.
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        Epilepsy Behav. 2018;83:131-136. PubMed abstract

        Deprez L, Jansen A, De Jonghe P.
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        Neurology. 2009;72(3):273-81. PubMed abstract

        French JA, Kanner AM, Bautista J, Abou-Khalil B, Browne T, Harden CL, Theodore WH, Bazil C, Stern J, Schachter SC, Bergen D, Hirtz D, Montouris GD, Nespeca M, Gidal B, Marks WJ Jr, Turk WR, Fischer JH, Bourgeois B, Wilner A, Faught RE Jr, Sachdeo RC, Beydoun A, Glauser TA.
        Efficacy and tolerability of the new antiepileptic drugs I: treatment of new onset epilepsy: report of the Therapeutics and Technology Assessment Subcommittee and Quality Standards Subcommittee of the American Academy of Neurology and the American Epilepsy Society.
        Neurology. 2004;62(8):1252-60. 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

        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.

        Hirtz D, Berg A, Bettis D, Camfield C, Camfield P, Crumrine P, Gaillard WD, Schneider S, Shinnar S.
        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;60(2):166-75. PubMed abstract
        This parameter reviews published literature relevant to the decision to begin treatment after a child or adolescent experiences a first unprovoked seizure and presents evidence-based practice recommendations. Reasons why treatment may be considered are discussed. Evidence is reviewed concerning risk of recurrence as well as effect of treatment on prevention of recurrence and development of chronic epilepsy. Studies of side effects of anticonvulsants commonly used to treat seizures in children are also reviewed.

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

        Jenssen S, Gracely EJ, Sperling MR.
        How long do most seizures last? A systematic comparison of seizures recorded in the epilepsy monitoring unit.
        Epilepsia. 2006;47(9):1499-503. 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

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        Centers for Disease Control and Prevention; (2018) https://www.cdc.gov/epilepsy/data/index.html. Accessed on 11/2/18.

        Noebels JL.
        The biology of epilepsy genes.
        Annu Rev Neurosci. 2003;26:599-625. PubMed abstract

        Ottman R, Hirose S, Jain S, Lerche H, Lopes-Cendes I, Noebels JL, Serratosa J, Zara F, Scheffer IE.
        Genetic testing in the epilepsies–report of the ILAE Genetics Commission.
        Epilepsia. 2010;51(4):655-70. PubMed abstract / Full Text

        Perucca E.
        Clinically relevant drug interactions with antiepileptic drugs.
        Br J Clin Pharmacol. 2006;61(3):246-55. PubMed abstract / Full Text

        Reid CA, Berkovic SF, Petrou S.
        Mechanisms of human inherited epilepsies.
        Prog Neurobiol. 2009;87(1):41-57. 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.
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        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

        Steering Committee on Quality Improvement and Management, Subcommittee on Febrile Seizures American Academy of Pediatrics.
        Febrile seizures: clinical practice guideline for the long-term management of the child with simple febrile seizures.
        Pediatrics. 2008;121(6):1281-6. PubMed abstract

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        Tomson, T and Battino, D.
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        Curr Neurol Neurosci Rep. 2011. PubMed abstract

        Wilner, AN.
        Sleep disturbances are common comorbidities in epilepsy patients.
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        Wirrell E.
        Infantile, Childhood, and Adolescent Epilepsies.
        Continuum (Minneap Minn). 2016;22(1 Epilepsy):60-93. PubMed abstract

        Epilepsy in Children

        My son (6) was diagnosed with BRE in August. After 3 awful months on Keppra, he is now taking Trileptal. He had 2 seizures while asleep and one during the day. Are there any other families dealing with this condition? Did your kids also have a daytime seizure? Any recommendations for doctors (we have Anthem blue Cross), have you tried out CBD oil, acupuncture etc? Any advice is very much appreciated.

        My daughter has absence seizures — diagnosed at 5; she’s now 11. Keppra is the drug of choice for kids with epilepsy though I’m not sure if it is the top choice for this kind (I’m not familiar w/this form). She sees Dr. Kuperman at Children’s Hospital. She started out on Keppra, then Depakote and is now on Lamictal. She does have a few break thru seizures but is mostly controlled. Best of luck to you and your family.

        Neurologist– possibly specializing in Epilepsy

        Dear BPNers: Since infancy my adult son has had seizures– both the tonic clonic (aka ‘grand mal’) kind and the relatively newly named/discovered ‘partial” seizures. The grand mal ones are nicely tamed with medication. The partial ones are an odd ball of symptoms with differing opinions about what happens, why, and how one might be helped. (Son has what is considered to be both ‘simple’ and ‘complex’ partial seizures) He just moved here from Oregon & we’re thankful he’s closer. Can you recommend a neurologist? Also recommend a neuro-psychologist ? If they specialize in epilepsy that’s a plus but not a requirement. Thanks so much.

        Our daughter has had complex partial seizures for 29 years. She’s 36 now. Unfortunately her epilepsy has been quite intractible. We’ve had wonderful care from the Epilepsy Center at UCSF. The neurologist’s name is Dr.Tina Shih. We’ve also seen Dr.Garcia there. Both are very good. Dr. Shih has been with us for 8 years. She’s kind,thoughtful, a good listener and takes the time to answer all our questions.

        We see Dr Foster-Barber at UCSF. She is a fantastic neurologist (although my son doesn’t see her for epilepsy). Very smart but still has good bedside manner. Great with the child and the parents.

        Neurologist for epilepsy, supportive of alternative therapy

        I am looking for a Neurologist in San Francisco for my 22 year old son afflicted by epilepsy and consequent memory impairment. We are looking for someone who has experience in dealing with memory issues in young adults and open to the idea of alternative therapy. If someone has any leads, it would be really helpful.

        I recommend seeing an epilepsy specialist at UCSF’s Epilepsy Center. My ex has had a good experience there with Dr. Paul Garcia for over 10 years. I’m not sure about using alternative therapies only depending on seizure severity, but complementary therapies would be supported. For the memory issues, an epileptologist is likely to order neuropsychological testing, which is done in house at UCSF. The testing is really helpful in terms of understanding the specific cognitive trouble spots, and also serves as documentation for accommodations in academic or vocational settings.

        Parent Reviews

        Hi- I’m sorry you’re going through this. My son was diagnosed with epilepsy this year at age 5. It’s such a tough thing to see your kids go through, and to have to change your life around. I found some FB groups too. Also the Northern California branch of the Epilepsy Foundation has an online parent support group, as well as some in person events. Take a look here:

        It’s a great organization with a ton of useful info on the website.

        Do you have good support from your doctors? We’ve been seeing a neurologist who’s part of the UCSF epilepsy department, and have found them very helpful. It took three attempts to find the right medication for my son, but his seizures seem to be well controlled now. Consequently the stress has gone down enormously. Sending much love to you. Know you’re not alone. Jackie

        Archived Q&A and Reviews

        Benign Epilepsy of Infancy/Phenobarbital

        A few months ago my 9-month old was diagnosed with benign epilepsy of infancy and put on phenobarbital. A few weeks ago, she had a breakthrough tonic-clonic seizure and our neurologist has upped her dosage of phenobarbital. Has anyone had experience with infants on phenobarbital and/or epilepsy of infancy? Thanks! Oakland Mom

        Our son was diagnosed with Benign Myclonic Epilepsy of Infancy by a doctor at UCSF when he was 3. His experience doesn't really match what I have read about Benign Epilepsy of Infancy, so I don't really know if that diagnosis is accurate. Kaiser doctors simply say he has Generalized epilepsy. He has had tonic-clonic seizures (febrile and without fever), myclonic seizures and absence seizures. While he had many seizures, they were pretty spread out, with months between each event, and most but not all, occurred during a fever. His first seizure was at 9 months old like your child. At 3.5 he was prescribed Keppra. He was seizure free while on Keppra for two years. So under his doctor's care, we weaned him off the medication last summer. So far so good–no seizures. My experience after meeting with several neurologists and having lots of tests done (MRI, many EEGs, bloodwork etc), is that there is still so much they don't know about epilepsy. They don't know why our son has it and can't say for certain that he is out of the woods. He didn't seem to have any side effects from the medication, but we do often wonder if certain aspects of his personality (his is very moody–goes from loving and sweet one minute, to very upset and aggressive another) are a result of the seizures or whatever is causing them. My understanding is that many kids ''grow out'' of their seizures. I hope that it will be your experience as well. maggie

        I am having a hard time remembering the specifics of the original post, but I saw the recent response and wanted to say that my daughter also has seizures and was diagnosed with Benign Rolandic Epilepsy. Hers have all been while she is sleeping and she currently takes medication to control them. Her seizures have been going on for about a year and she is now 6, so not in infancy. We too had EEG's and MRI's. There does seem to be very little known about the causes or the specifics, but our doctors have also reiterated that most kids will grow out of them. It is also hard with young children to be sure if some of their behavior is because of the seizures or even the side effects of the medication.

        Wish I had more helpful advice, but wanted you to know that you are not alone and that it is likely you will be able to control them with medicine and my hope is that your child will also grow out of them. I know I was very overwhelmed in the beginning and spent way too much time online reading things that probably weren't helpful. Suzanne

        Worried about giving my daughter epilepsy medication

        Wanted to get any feedback on parents who had medicated their children for epilepsy, specifically with Gabapentin. Or if your child has epilepsy and you chose not to medicate, how you made that choice. My daughter has been diagnosed with benign rolandic epilepsy. The doctor gave the option of medicine, but essentially gave us the choice of whether or not that was the route we wanted to take. Her seizures to date have only been while she is sleeping, so there is less concern with injury. They often happen when she is overtired, so we are really working to avoid that, but sometimes it is inevitable and she still has them. The seizures have also been getting longer which is just stressful to watch. In general my point of view is to avoid medicine if possible, but I also want to do what is best for my child and for the family and am just struggling to decide what that is. Searching the internet is definitely not helping and so few people have dealt with this, so was hoping the BPN community would have some advice or insights. Thanks! Concerned Mom

        I will speak to this from the perspective of the epileptic. I had adolescent epilepsy and was eternally grateful when we found a medication that kept me seizure-free. It freed me emotionally from 1) my fear of seizing in front of peers — a social fear; 2) my fear of seizing when no one was around — a legitimate logistical fear; and 3) my fear of seizing period.

        Why suffer seizures when there is medication that can mostly control them? I haven't had a seizure since I was in my twenties — that was when I was on a trial off-medication. I hated the surprise, the disorientation afterwards but mostly the return of all my fears. Then, I went off again when I wanted to conceive and my neurologist at the time convinced me to remain off, believing that I would no longer suffer seizures, but agreeing I could return to taking medication if needed. I have been seizure-free and am now 48 years old. If I began having seizures again, I would go immediately back onto medication. For the record, I took Tegretol. Sometimes modern medicine wins the day.

        If you want to use a nutritional approach, a ketogenic diet has helped many, many epileptics. A movie Meryl Streep had made (!) about this topic is called ''First, Do No Harm.'' Apparently, because the brain needs and uses quite a bit of energy and is mostly made of fat, eating high fat foods can provide a steady supply of fuel, helping to avert seizures. Quality of fat is important, of course. Dr Eric Braverman, MD, in his book ''The Healing Nutrients Within'' has a chapter on the amino acid taurine, subtitled ''Fights Seizures.'' Nori

        Ultimately the decision will be yours and your family's. But as an epileptic myself – since teen years – I would advise the use of medication to stabilize her and provide her with a modicum of quality of life as close as possible to ''normal''. I have been taking 1 medication ever since my diagnosis, and I have been seizure free for over 20 years. I am considered a high-functioning epileptic. Taking my medication has allowed me to go to school – through graduate level – , to be independent, to have a career, to drive at will, and to become a mother. My quality of life is the best I can make it. Would I give that away on the risk of loosing any portion of the above, and diminishing my quality of life because of a seizure that could come unpredictably, over which I have no control. Never! I wish you well in arriving at your decision.

        I know 4 people with epilepsy, including one who only has seizures when asleep, and they all take medication to control their seizures. Seizures are very stressful for your body to withstand. Seizures speed up your heart rate, contract the lungs so breath is pushed out of the body, and result in short-term memory loss. I would advise you to discuss the benefits of medication with your daughter's neurologist. You may even want to get a 2nd opinion at Children's Hospital, Oakland. Their head neurologist is Dr. Daniel Birnbaum. Even though your daughter just has seizures when she's sleeping, it would be very beneficial to her overall health if she didn't have to have seizures at all, if they can be controlled by medication. anon

        Thanks for reaching out. Your posting struck a chord with me in part because of your saying that ''so few people have dealt with this''. Childhood epilepsy is quite common, and many, many parents are dealing with it. One place to look for answers from other parents is the discussion forum at http://epilepsyfoundation.ning.com/forum

        Now for your question: Seizures during sleep are not always ok. It's true that there is much less of a risk of falling or injuring oneself in some other way, – but the fact of missing out on regular deep sleep can be a real problem. My niece has epilepsy, and most of her seizure activity takes place while she is asleep. The parents decided against a number of treatment options. My niece is now a teenager. She has had very few seizures since going through puberty, but she is severely developmentally delayed and has many cognitive problems. It sounds like your daughter has fewer and shorter seizures, so the decision to treat or not to treat her epilepsy is of course different. My point is just that fall injuries aren't the only risk to consider.

        As for Gabapentin: Epilepsy medications often require trial and error. A drug that works well for one child may not work at all for the next child, or may have unacceptable side effects. Gabapentin didn't work for my niece, but it may work for your daughter. Aunt

        My son started having seizures when he was around 18 months old. At first they were infrequent and we chose not to have him medicated but over the course of a year or so they became much more frequent and longer. The stress of watching over him while he had seizures was incredibly stressful for us as parents, but we were hesitant to medicate him because we were worried about the potential side-effect of Depakote (liver damage). Our pediatrician said that as long as the seizures remained infrequent and short, medicating was a judgement call on our part (this was about 16 years ago, so thinking on that may have changed). At first we worked hard to avoid his major triggers (fevers and lack of sleep) but eventually he was having them at completely random times.

        Two things changed our minds about medicating him: he started being aware of the seizures as they were coming on and they really frightened him, and then he had a 20 minute seizure. After that, the decision to medicate was easy (although the task of doing it, and the associated blood tests for medication levels were hard). It took a little while to get the dosage right, but once he stopped having seizures we all breathed a little easier.

        My younger child also had a few seizures, but it was nowhere near the frequency or intensity. However, her seizures occurred as she was entering puberty so they were much more distressing for her right at the start. We put her on Keppra for about three years.

        Both kids were weaned eventually off meds, neither had any long-term effects that we've been able to discern. Been There Twice

        I'm sorry that your family is going through this- it is beyond terrifying watching your child have a seizure. What I am learning about epilepsy is that there are a lot of variations in both diagnosis and patient, which is why I also find the Internet to be a difficult source for information.

        I'm not sure if our story will help, but I'm happy to share: My 16-year-old daughter was just diagnosed with epilepsy. She had a grand mal seizure (unconscious) during her sleep when she was 15 and the neurologist said there was a strong chance she would not have another, so medication was not an issue. 14 months later, she had a complex partial seizure (unconscious), also while sleeping. The doctor said we would have to make a decision about medication and ordered a "sleep deprived" EEG to see if they could find any underlying cause for the seizures and get more information as to what part of the brain is involved. At that point I wanted to take a "wait and see" approach as I did not want to start her on meds until I felt sure she would have a third seizure, while my husband was ready to start meds. The doctor did not push for meds but helped us understand the risks if she were to go on them. During the EEG, she was able to fall asleep and had another seizure during the exam. The doctor immediately prescribed Keppra and she took her first dose that evening.

        If she had not had another seizure, I would have been reluctant to treat her with meds until I was clear it was not random. We chose to medicate because my daughter has seizures while sleeping where she becomes unconscious and hers last longer than usual (4-5 minutes). She also vomits after a seizure, and so we feared she would choke on her vomit and not be able to wake herself up. Thankfully, she is tolerating the meds. The doctor suggested that we try and "wean" her off the meds in a few years, as she may outgrow the seizures. I hope you are working with a pediatric neurologist or epilepsy specialist. Our daughter has been treated at Children's Hospital and they have been absolutely phenomenal. I hear Stanford and UCSF also have excellent programs. anon

        Childhood absence epilepsy in 4 year old

        I'm posting on behalf of a friend, whose son (4.5 years old) has just been diagnosed with childhood absence epilepsy (CAE – in which the seizures manifest as very brief staring spells with no convulsions). My friend and her husband have been carefully researching the options for treatment and have consulted with several pediatric neurologists, but have found very little information on the outcomes of a 'watch and wait' approach instead of medicating. Has anyone had experience with CAE, and in particular, with the watch and wait approach; or know of any relevant research? Thanks concerned friend

        My son had absence seizures which he was diagnosed with at around 8 years old. In his case, he would see things out of the corner of his eye (wolves, for instance) and would go absent almost imperceptibly) A neurologist put him on Neurontin, but my son hated it and refused to take it. He said it made him feel ''weird''. So I figured we'd just wait it out and see what happened, which is not really my advise, but in our case he did outgrow it. My son was triggered by strobe lights, or any fluorescent lights that had a pulsing effect (sometimes this is almost subliminal and hardly detectable by most of us). We did research on what kinds of things might trigger him and used avoidance techniques. I'm not saying your friend should do this, as there are different causes/outcomes of seizure disorders, but in my son's case, being careful and aware kept him safe and eventually he outgrew it for some reason. Anon

        Hi, We are in a similar situation as your friend. Our son is not yet 3.5, and we are watching and waiting too. We saw a pediatric neurologists at Children's and decided to not try medication at this time. We thought of changing our minds and then spoke to one of the nurse practitioners there. She was lovely–took time with me on the phone. One thing she said is that if we feel like the spells are affecting his ''quality of life'' or if developmental milestones were not being acheived, you might look at medication. Quality of life can mean many things to many people. like social stuff, does he want to play sports and can't because of attention issues, can he follow at preschool to have fun and learn. We might go the med route someday. We feel it will be more apparent if he needs help with medications as he gets a bit older. If you want to give my contact info to your friend, I'd be happy to talk with her/him. BTW, I have epilepsy. I played sports in college, had two beautiful boys with my husband, and went to graduate school–all while highly medicated!

        One more thing: tell your friend to check out epilepsy.com. It's a great website. They have a community forum that they might post on to get the info they need. Laura

        I would encourage them to consult with the Stanford Epileptic Center one of the most renowned epilepsy centers in the country, if they have not already, they are very much about progressive treatments and most importantly quality of life both for the patient and the care-givers. Epileptic since my teen years.

        Absence epilepsy diagnosis for 6 year old

        My 6 year old child has just received the diagnosis of having absence epilepsy–a mild form in which the child stops whatever he/she is doing, stares for a few second and is non-responsive and then goes back to normal. I know this is not he end of the world and is treatable (ok, right now I am a bit sad about this).I wonder if there are families in the list in the same situation that could share their stories with me. I feel I need to learn more from other families/patients. I would also like to know if it is possible to treat that with alternative therapies such as homeopathy, acupuncture etc (not that I will be trying, but I am very eager to learn about such cases). Thanks.
        Concerned mom

        hi – I didn't receive your specific diagnosis, but another. The neurologist recommended drugs which I did . my huge regret is not getting a second and third opinion before taking such significant steps. I urge you to explore all alternatives and getting a second opinion on the diagnosis and treatment options. Hang in There!

        I hear your pain. My son has epilepsy too. It was diagnosed 2 years ago, when he was 9 years old. Since that time things havn't been as bad as I had feared, and are mostly under control. In terms of alternative therapy, I do give him an omega 3 suppliment (fish oil) every morning. I don't know that it has done him any good, but it seems like some experts feel omega 3 is good for everybody. Not to be glib, but on the plus side, I know my son can never be drafted. Best of luck

        Dear fellow concerned Mom, when my son turned 6 yrs. old he came down with absence seizures. The triggers seemed to be related to pollen allergies, an abnormal brain development, and stresses in the home and environment (starting of school). I have been going through 5 years of a painful but educational growth- through trial and error processes and might be able to provide you with a lot of helpful information that I would have been happy to have had at that time. I think it is more efficient to talk about all the details on the phone and if you are interested please send me a short email and we can get together on the phone. Doro

        You didn't say how severe a case your child has, I'm assuming it is fairly severe since you sought medical advice. Anyway, we have a very mild form of something like this in my family – we call it ''the STARE'' and joke about it. None of us have ever needed treatment for it, but I wanted to say that if your doctor decides to treat with Lamictal, I strongly suggest trying a very low dose. The reason I say this is that I took Lamictal for bipolar disorder and found it to be effective at a very low dose. Sometimes it takes a while for doctors to figure out appropriate therapeutic levels for new drugs. I am not a doctor, I just think it is worth giving the lower dosage a chance to work. Wishing you luck and strength

        Although neither homeopathic remedies nor acupuncture will help your child's epilepsy (and acupuncture or tainted homeopathic remedies from China could worsen it), I have seen research indicating that fish oil, exercise, and Co-Q10 might improve brain health: http://hdlighthouse.org/TreatmentNow/updates/0000omega3.php Hopeful

        I asked one of my closest friends whose child has epilepsy if she had any specific advice for you. Here is what she wrote: ''DEFINITELY get in touch with the Epilepsy Foundation in Nor Cal. http://www.epilepsyfoundation.org/local/norcal/people.cfm. Talk to Neva Hirschkorn. Also see http://www.becketfilms.com/index.php and click on Childhood Epilepsy link. I totally understand the sadness, yet education is the best thing. Classical absence isn't too bad; atypical absence can sometimes be difficult to control. She needs to make sure she gets the right doctor/right meds. Also, keep an eye on school performance. If grades are suffering get an evaluation through the school district and get an IEP if necessary. Be persistent; if her kid needs help, he/she has a full legal right to it, especially if there is a diagnosis like epilepsy.'' Hope this is helpful. best, Susan

        Benign Epilepsy Of Childhood

        My son has had two unexplained seizures, five weeks apart. He is four and very bright, energetic and happy. He had a CT scan and sveral blood tests which were completely normal. We have an EEG scheduled at Children's a few weeks from now. Both episodes came on about 2 minutes after my son fell asleep and has always done brief and minor twitching in his sleep. From what his ped. says, these characteristics are textbook ''Benign Epilepsy of Childhood''. I am just wondering if anyone has had any experience with this or any other seizure disorder in preschool aged-children?

        My son (now 12) has had very occasional seizures since toddlerhood. We did not realize that he was having seizures until he was about 10, when he had a BIG one, in his sleep, that lasted about 4 minutes. 911 was called and he was taken to Children's Hospital. Tests were conducted and all was found to be normal, the diagnosis given was benign childhood seizures. The doctor told us that they would taper and diminish by puberty (about age 14). In retrospect, he had probably had several seizures, always in his sleep, that I had thought were something else (night terrors, for example). We have a history of brain tumors in my family (mother, maternal aunt, sister) that have manifested themselves via seizures so I was PANICKED! He has not (to my knowledge) had a seizure for about 2 years but he is a very agitated sleeper (teeth grinding, wierd breathing noises) so it is possible that some may have slipped by. When he was diagnosed I was so worried that he would have a seizure while away from home. With his consent, we told the adults at his school and his teacher let the other kids in his class know (they were allowed to ask him questions), which interestingly enough was of great relief to him. When invited on sleepovers, I always let the parents know, I have been amazed at how many of then have experience with this type of disorder (themselves, a friend's kid, a sibling, etc). Make sure you trust your doctor and don't hesitate to get a second oppinion. There is information online (healthcentral.net) about this disorder because it is so common (esp. in boys). Good luck! Susan

        I live in Seattle, but my brother who lives in Berkeley (and subscribes to the network) forwarded your question to me.

        My son does have Benign Rolandic Childhood of Epilepsy, which I think is the same thing you're talking about it. (The rolandic part is just the part of the brain that is mainly affected.)

        First of all, know that I understand how frightening and confusing this can be. You think you have all your child's idiosyncrasies figured out by the time they're in preschool, and then something like this comes up! My son was 7 when he had his first seizure (which were actually two of them, about seven hours apart). My husband and I were so frightened. We called 911, went to Children's Hospital, got him all checked out, brought him home, and he had another seizure. All his seizures occur shortly after he falls asleep, or at a change in his sleep pattern — apparently it has something to do with sleep cycles.

        To make a long story short we saw several neurologists, until we found one who would really hear us. We've had 3 or 4 EEGs and two MRIs. The first EEGS were abnormal (which just indicates that there is seizure activity going on — more about this later) and the MRIs were both normal. Our latest EEG (nearly two years after the first seizure) was normal. We started him on Neurontin, and he continued to have seizures. He was switched to Keppra and had only one seizure on this medication. He's been seizure-free for one year and four months! (There's hope! You'll get through this, and your son will be fine.)

        The good news is that if the diagnosis is accurate, there's a very good chance that he'll grow out of it by the time he's 16 (I think that was the age we were told). Most kids with this type of epilepsy have their first seizure sometime between the ages of 5 and 9 ('though it sounds like your son may have started early).

        The EEGs are a strange thing, though. You can have a normal one but still have seizures, or an abnormal one, but never manifest a seizure. I'm told the EEGs are a ''guide'' but not an absolutely reliable indicator of what's going on.

        Another thing we learned is that sometimes there are twists on this type of epilepsy that can include behavioral issues or language processing issues. Our son had difficulty finding words for about six months, until he was switched to a more effective medicine. Two neurologists said this wasn't a possibility, but our final neurologist had just read an article in a neurology journal about this syndrome. If you ever need a copy of the article, let me know. (It's a pretty rare thing, I think.)

        From what I understand, lots of kids with this type of epilepsy don't even need medication, depending on the severity of the seizures. However, there is some new research about seizures and their effect on the brain. You might want to ask about that, if your doctors recommend no medication.

        I guess my main advice is to keep looking for a neurologist who HEARS you and answers your questions, who you feel you can really rely on. Our doctor, Sarah Cheyette, recently moved to San Francisco. I don't know if she's started her new practice yet. I truly feel for what you must be going through. We were there! Your son will be fine, you will be fine (but will probably not remember this time in your life very fondly), and you'll learn a lot. Rebecca

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