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80% of children with active epilepsy had a behavioral disorder and/or cognitive impairment in 2014.

CYE are at higher risk for developmental, intellectual, and mental health comorbidities with 80% of CYE experiencing cognitive impairment and/or at least one DSM-IV-TR disorder according to the Neurobehavioral Comorbidities in Children With Active Epilepsy: A Population-Based Study which found four comorbidities most commonly associated with epilepsy.

  • Attention-deficit/hyperactivity Disorder (ADHD)
  • Learning Disabilities 
  • Mental Health Comorbidities: Depression, Anxiety, Autism spectrum disorders
  • Other Concerns for CYE
    Attention-deficit/hyperactivity Disorder (ADHD)

    The National Institute of Mental Health defines ADHD as a "brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning of development."15 The signs and symptoms may differ in individuals with ADHD, but the hallmarks of inattention, hyperactivity and impulsivity are key behaviors found in children. Most children diagnosed with ADHD have a combination of these behaviors and may be successfully treated with medical and/or behavioral therapies. In CYE, it has been found that there is a 20-50% prevalence rate versus a prevalence of 7-9% in the general population. CYE with ADHD often have additional mental health comorbidities such as oppositional defiant disorder, conduct disorder, learning disorders, depression, anxiety, and autism spectrum disorders.37

    Diagnosing ADHD

    The American Academy of Pediatrics (AAP) published clinical recommendations for the diagnosis and evaluation of ADHD in children with companion recommendations for families. (ADHD: Clinical Practice Guideline for the Diagnosis; Diagnosing ADHD).

    The AAP clinical recommendations follow the Diagnostic and Statistical Manual of Mental Disorders (DSM-5,2013) Criteria for diagnosis which include:

    • At least 6 symptoms of inattentions and/or at least 6 symptoms of hyperactivity and impulsivity
    • Occurrence before age 12
    • Must occur in at least two settings (home and school)

    The National Institute for Children's Health Quality (NICHQ) Vanderbilt Assessment Scales are intended for use by health care professionals to help diagnose ADHD in children ages 6-12 and may be used for free when credited as an original source. A 2nd Edition version with a complete toolkit is available from the AAP Bookstore. The assessments may be utilized by both the teacher and the parent to help support a possible diagnosis and monitor care.

    Treatment of ADHD 

    The AAP clinical practice guidelines support that CYE may safely be treated with FDA-approved medications in addition to evidence-based parent and/or teacher administered behavioral therapy; however, this may vary due to the age of the patient.

    Learning Disabilities

    Learning disabilities among CYE is approximately 32% with severity correlating with the degree of learning impairment (learning disability). CYE with mild to moderate epilepsy are less likely to be affected with learning disabilities than those with a more severe condition. Learning disabilities, cognitive impairment and intellectual disabilities are words often used interchangeably yet, incorrectly.

    • Cognitive Impairment: Difficulty with memory and thinking skills

    • Learning Disability & Intellectual Disability (ID): Difficulty learning and retaining the same knowledge base as peers who do not have a learning disability. Although these disability types are often used interchangeably, expresses that children with an ID may have mild to severe difficulties "in both intellectual functioning (e.g. communicating, learning, problem solving) and adaptive behavior (e.g. everyday social skills, routines, hygiene.)"  

    Like epilepsy, learning difficulties are neurologically-based processing problems that can interfere with CYE abilities to read, write and/or do math.  CYE may have normal intelligence, but have a difficult time processing information, remaining organized or be affected by long or short- term memory problems. They may also be adversely impacted by the type of seizure they are diagnosed with.

    CYE with day-time seizures may be adversely impacted by: 

    • Reduced alertness
    • Decreased short term memory storage and "abstraction" 

    CYE with night-time seizures may have difficulty:

    • Consolidating memories
    • Difficulty with language 

    Educating families and patients is core to helping individuals with learning disabilities achieve their highest potential. The skills CYE learn may help them become high-functioning adults that can engage in self-care management. (NIH, Ch.7) 

    Visit for more information for families about learning disabilities. 

    Other Concerns for Children and Youth with Epilepsy


    According to the National Profile of Childhood Epilepsy and Seizure Disorder, CYE may have difficulties beyond seizures, seizure medications, and co-morbid conditions. The report suggests that CYE may be perceived as "different" by their peers as well as significantly less likely to receive care in a medical home, which leads to a higher risk of having unmet needs for care coordination, medical care, and mental health services. Further, this disparity likely coincides with findings that children and youth from racial and ethnic minorities, as well as lower income families, are disproportionately affected by epilepsy. It has been found that even when CYE screen positive for a behavioral health concern that a referral is made on 20% of the time, with stigma cited as the primary barrier for lack of follow-through.34

    Sudden Unexpected Death from Epilepsy

    SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP.38 This is the leading cause of death in people with uncontrolled seizures.

    The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of victims do show evidence of a seizure close to the time of death while most, but not all, cases of SUDEP occur during or immediately after a seizure. The exact cause is not known, but possible factors include pauses in breathing as a result of a seizure, dangerous heart rhythm as a result of a seizure, or mixed causes of breathing problems and irregular heart rhythms. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm.38 More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

    As of today, there is no way to prevent SUDEP other than by better controlling seizures. Therapies and seizure-management practices are common ways to control seizures.

    Steps can be taken to avoid SUDEP:

    The Danny Did Foundation offers many resources and materials on SUDEP for parents, caregivers, students, schools, and medical professionals

    Additional Resources


    In 2007, Pediatrics published "Guidelines for Adolescent Depression in Primary Care (GLAD-PC): I. Identification, Assessment, and Initial Management" to help primary care physicians manage adolescent depression.  Depression has been reported in 8-35% of CYE with higher rates of depression reported in adolescents who have a history of seizures in public places.

    The screening tools included in the guidelines are meant to be a diagnostic aid in the screening of depression, but "person-to-person interviews" by a mental health professional using the DSM-5 criteria is crucial to accurate diagnosis. A full chart of Mental Health Screening and Assessment Tools for Primary Care can be found here


    ​ADHD has been found to be present in 20-50% patients with epilepsy. The Generalized Anxiety Disorder 7-item (GAD-7) is a quick tool that should be used for screening and monitoring symptom severity aiding clinical assessment and diagnosis by a mental health professional. 

    Autism Spectrum Disorder

    ​Autism spectrum disorder (ASD) is growing in prevalence in the US with individuals with ASD having a higher than average risk of epilepsy, reportedly co-occurring at rates of 8.6%. National Institute of Neurological Disorders and Stroke found that about 20-30 percent of children with ASD develop epilepsy by the time they reach adulthood.24   Research also supports increased risk of epilepsy in ASD among females and individuals with intellectual disability.

​References for this page can be found here​.

The Coordinating Center is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) to establish a multifaceted community-based system of care that ensures that Children and Youth with Epilepsy (CYE) have access to the medical, social, and other supports and services that they require to achieve optimal health outcomes and improved quality of life. This Web site is funded by the US Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA).
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