Childhood Epilepsy: Mental Health and Behavior
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Causes of Mental Health and Behavioral Issues
Although many of the mental health and behavioral problems associated with epilepsy are also seen in people without epilepsy, they occur more frequently in those who have the disorder. People with epilepsy are as much as five times more likely to have mental health and behavioral problems, with an incidence of between 30 to 50 percent, as compared to 8.5 percent in the general population.
One of the things children with epilepsy will talk about is that they have a boo-boo, but no one can see their boo-boo. And this ends up having a negative impact on a child's sense of self.
Nicole Danforth, MD
The factors that may give rise to mental health issues in children with epilepsy are almost as numerous and varied as epilepsy's many causes. In general, these factors fall into two broad categories: internal and external. Internal factors are a result of problems in the structure or function of the brain, whereas external factors are not biologically based and instead result, for example, from the reactions of others to an individual's epilepsy or from a child's own response to feelings of anxiety or depression. Often, both internal and external factors play a role in mental health issues.
Internal Factors
Internal factors are also referred to as biological or intrinsic factors because they are part of an individual's biological makeup, rather than environmental factors. Because the brain is responsible for behavior as well as motor control and perception, it is not surprising that a disruption of normal brain function such as occurs in epilepsy might also affect behavior. However, knowledge is limited as to why or how such a disruption may cause mental health or behavioral changes.
Seizure type appears to play an important role in the extent and type of behavioral change that results. For example, children who experience generalized seizures are more prone to problems with inattention and hyperactivity than are children who have partial seizures. However, some complex partial seizures may have even more profound consequences. When, for example, seizures involve the limbic system, a group of structures responsible for generating and controlling emotional response, they pose a particularly high risk of behavioral and personality disorders.
External Factors
Mental health and behavioral issues can also result from external factors that have no direct connection to the underlying mechanisms of epilepsy. For example, they may arise from environmental conditions, such as the reactions of other people to an individual's seizures and epilepsy. Epilepsy and seizures carry a stigma that can be frightening or unsettling to others who do not fully understand the disorder. Reactions based on ignorance and misperception can create serious psychological problems for the individual experiencing seizures.
One of the reasons that we are so eager to get kids with epilepsy to master their world and do things that all kids do, is that important piece of getting a good sense of self and saying, 'Hey, I can do this too - I'm just like everybody else.'
Nicole Danforth, MD
Typically, an individual's own reaction to his or her condition is the initial cause of a problem—such as when fear and uncertainty give rise to a deeper and more chronic condition of anxiety, or when low self-esteem results in poor academic performance. However, such personality issues may be exacerbated by a social context in which the stigma about epilepsy and the low expectations of an individual with epilepsy exist.
Self-esteem and self-image in childhood can be critical to success and happiness throughout life. How seizures and epilepsy affect self-esteem depends on many factors. The most important factor is the type of response a child receives from his or her family.
To learn more about the family's effect on a child's mental health and well-being, see the Family Life section.
Side Effects of Anticonvulsant Medications
Another external factor that may influence the behavior of an individual with epilepsy is the use of certain medications to control seizures. Anticonvulsant medications aim to inhibit excessive electrical activity in the brain. This curbs the abnormal surges characteristic of seizures. However, this effect may also alter behavioral and cognitive function.
Not long ago, so few epilepsy treatments were available that the side effects on behavior and cognition were considered a small price to pay for the benefits of seizure control. However, pharmacological treatments have advanced considerably along with our current understanding of the causes of seizures and how they spread through the brain. Today, a drug that significantly impairs a child's ability to learn or behave normally despite providing control of seizures might be considered just as unsuccessful as a drug that fails to control that child's seizures. However, depending on how difficult it is to achieve control of a child's seizures, accepting some cognitive and behavioral side effects may be necessary even today.
Types of Mental Health and Behavioral Issues
The most common types of mental health issues associated with epilepsy are depression, attention deficit disorder (with or without hyperactivity), anxiety disorders, and aggression.
Depression
Depression is the mood disorder most commonly associated with epilepsy. However, it can often go unrecognized and untreated in people with the disorder, especially in children. Epilepsy-related depression can occur before, during, or after seizures, but is most often associated with periods between seizures.
The symptoms of depression vary widely from one individual to another. Those most often seen in children with epilepsy are sleep disturbances, fatigue or listlessness, lack of enthusiasm, and frequent emotional outbursts. Other behavioral issues, such as anxiety, agitation, frustration, or impulsive behaviors, often accompany depression.
Although the cause of depression in people with epilepsy is unknown, it is thought to result from both internal and external factors.
Attention Deficit Disorder
Attention deficit disorder with or without hyperactivity is considered a common behavioral problem in children with epilepsy. It is estimated that nearly 8 percent of children with epilepsy have problems with attention. In general, attention deficit/hyperactivity disorder (ADHD) is a neurobehavioral disorder that causes individuals to be easily distracted, frustrated, fidgety, impulsive, and forgetful. The disorder makes learning and social interactions difficult, regardless of an individual's cognitive abilities. While ADHD is a clinical diagnosis made on the basis of observation and medical history, mental health experts and scientists agree that there are identifiable characteristics of the disorder. Measures such as rating scales and reports from teachers and parents can be helpful in making the diagnosis.
Anxiety Disorders
Anxiety disorders associated with epilepsy may take the form of chronic, generalized worrying; acute, overwhelming panic attacks; or obsessive-compulsive tendencies. The disorders often arise in response to the unpredictability and lack of control associated with seizures. For some people with epilepsy, anxiety may cause them to overestimate the threat posed by future seizures, or underestimate their ability to cope. Such thoughts can cause physical symptoms that accentuate the feeling of a lack of control.
Aggression
Impulse-control problems are common among children with epilepsy. One of the most common forms of impulsivity is aggression. Although the cause of aggression in people with epilepsy varies, the unpredictability of seizures and the individual's lack of control over them may contribute to frustration and irritability. In addition, children who are more severely affected and lack good communication skills may act out their frustration with aggressive or even violent outbursts. In general, aggressive behaviors tend to become less frequent and decrease in severity as a person grows older. However, aggressive tendencies may then be replaced by depression and anxiety.
Autism
Autism is a spectrum disorder, or combination of symptoms, characterized by deficits in verbal and nonverbal communication skills, severe social dysfunction, and repetitive behaviors. Such behavioral problems are sometimes seen in children with Lennox-Gastaut syndrome, tuberous sclerosis complex, Angelman syndrome, and other genetic disorders. Despite decades of research attempting to link autism to a wide variety of potential causes, there still is no consensus, and effective medical treatments have yet to be found. However, there are behavioral and educational interventions that have been developed specifically for individuals with autism.
Diagnosis and Treatment
Because of the profound consequences of epilepsy-related mental health issues, specialists emphasize that early identification and intervention are critical to improving quality of life and overall outcome. Experts recommend that people diagnosed with epilepsy be evaluated by a psychiatrist, psychologist, or social worker for mental health and behavioral problems. These professionals can help to develop a plan for treating and/or managing these problems to minimize their effects.
Children with epilepsy may also need help and support in finding ways to address the social aspects of having a seizure disorder, such as how to talk with peers about epilepsy, and their fear of having seizures. Knowledge is power for the young person, and offering information as well as emotional support can help a child to begin to manage his or her illness. Parental guidance and support is an essential part of this objective. Helping your child to understand what epilepsy is, how his or her brain works, and what is happening during a seizure can help that child feel both empowered and confident.
For more information on how to help your child and others in his or her world understand epilepsy, see the Talking About Epilepsy section.
The most effective treatments for the mental health and behavioral issues commonly associated with epilepsy often involve a combination of medications and cognitive and behavioral interventions. Talk therapy plays an important role in these treatments. Anxiety and depression can sometimes be effectively managed with antianxiety and antidepressant medications, such as a class of drugs called selective serotonin reuptake inhibitors, or SSRIs. To treat attention deficits, certain types of stimulant medications have proven effective.
However, it is important to understand that medications can interact if taken in combination. This is of particular concern for people who take anticonvulsant medications to control seizures. The addition of a new medication could cause the anticonvulsant's effectiveness to decrease or could create toxic blood levels. Medications used to treat certain psychiatric disorders have also been found to lower seizure threshold in some children. For this reason, it is important to consult with a psychiatrist and/or primary care physician before beginning a course of treatment for mental health issues or any other medical problem. It is also important to inform all specialists of the full list of medications a child may be taking. This list should include alternative therapies and vitamin supplements.
Important Points to Remember
- Epilepsy increases a child's risk of developing mental health and behavioral problems by a factor of five.
- Between 30 and 50 percent of children with epilepsy will develop a behavioral or mental health problem.
- The types of behavioral problems associated with epilepsy include attention deficit, hyperactivity, anxiety, depression, aggression, and autism spectrum disorder.
- Early identification and treatment of behavioral problems provides the best possible outcome.
- Experts recommend that all people diagnosed with epilepsy be screened for mental health and behavioral problems.
- The most effective treatments for epilepsy-related behavioral disorders often involve a combination of medication and cognitive and behavioral intervention, including talk therapy.
- Medications can interact with each other. Because of this, it is important to inform your medical provider about all medications and therapies your child is on.
Relevant Specialists
Neurologist
A neurologist and a pediatric neurologist are physicians who care for people affected by disorders of the nervous system. An epileptologist is a neurologist or a pediatric neurologist who specializes in the treatment of epilepsy.
Psychiatrist
A psychiatrist is a medical doctor who specializes in the diagnosis and treatment of mental and behavioral disorders. A psychiatrist who treats people with epilepsy is familiar with the cognitive and behavioral issues that are common to the disorder and knows what treatment options are most effective for these issues, including medication options.
Psychologist
A psychologist is a licensed professional who specializes in the diagnosis and treatment of mental and emotional problems, and may be involved in evaluation, testing, counseling, and/or psychotherapy.
Social Worker
A social worker is a licensed professional who provides support to families and children with medical or psychological issues.
Child & Adolescent Psychiatry at Mass General
We provide evaluation and treatment of children & adolescents with the full spectrum of psychiatric conditions.
Patient & Family Stories
In addition to describing experiences common to most people affected by epilepsy, each story illustrates a particular issue that has been important to that family and that other families affected by epilepsy may encounter.