November was Epilepsy Awareness Month so this is a good opportunity to learn more about this condition. Epilepsy is a chronic neurological disorder characterized by recurrent seizures caused by abnormal electrical activity of the brain. It is estimated that over two million people, approximately 1% of the general population, are affected by this disorder. Most people diagnosed with epilepsy do not have a developmental disorder, however for those individuals who are developmentally disabled epilepsy is quite common. For example; about 30% of children with epilepsy have other developmental disabilities. The risk of a developmentally disabled child experiencing a seizure by the age of five is approximately four times greater than the general population1. Sixty-nine percent of children with epilepsy and an intellectual disability also have at least one additional developmental disability, such as:

  • Cerebral Palsy

  • Autism Spectrum Disorders

  • Fragile X Syndrome2

Signs/Symptoms

There are many levels of seizure activity ranging from mild to severe. One study indicates the most common type of seizures in children with developmental disabilities are generalized (tonic-clonic or grand mal). Others have partial seizures (simple or complex) and some have more than one type. Generalized seizures are an excessive electrical charge involving most or all of the brain. Partial seizures are restricted to one region of the brain and effect alertness, responsiveness and memory3.

Risk Factors

For some there is no known cause for epileptic seizures. For others epilepsy can result from:

  • Stroke

  • Genetic factors

  • Birth Trauma

  • Brain injury

  • Vascular anomalies4

Intellectual disabilities, cerebral palsy, neonatal seizures (at birth and up to the age of four weeks), prematurity and autism spectrum disorders increase a child's risk of developing seizures5. Individuals with a developmental disability and epilepsy have:

  • Higher rates of recurring seizures

  • Lower rates of “outgrowing” seizures

  • Higher rates of unexpected death after adolescence6

Diagnosis/Treatment

Special attention is often needed when diagnosing and treating individuals with both developmental disabilities and epilepsy. Different approaches and treatments may be necessary. Other deficits and/or abnormalities can interfere in the assessment of epilepsy. Problems may include:

  • Lack of or limited communication with the individual

  • Difficulty interpreting symptoms

  • Difficulty distinguishing between epileptic and non-epileptic behaviors

  • Side effects related to current medications7

One important aspect of a good assessment is a reliable history provided by family members or caregivers who have witnessed the seizures. Medical tests such as EEG's and MRI brain scans are also used in determining a diagnosis of epilepsy.

Treatment Goals

The goal for anyone afflicted with epilepsy, regardless of the presence of a developmental disability, is complete seizure control and the avoidance of adverse effects from medication prescribed for this purpose. Reasonable goals include:

  • “Best” control of seizures

  • Limited medications/alternative drug options

  • Protection against injuries during seizures

  • Optimization of quality of life

  • Minimizing medication side effects8

It is important for an individual with developmental disabilities and epilepsy to work with an interdisciplinary team, including family and caregivers, to enhance functioning, ensure safety and optimal quality of care. History has shown that individuals do best when all team members communicate and work together toward common goals. A person with developmental disabilities has numerous hurdles to overcome and the presence of epilepsy increases the difficulties they face throughout their lives. The involvement and support of a strong interdisciplinary team is paramount for the individual to lead the best possible life.

1Epilepsy Foundation of Metropolitan New York Website, “FAQ-Epilepsy and Developmental Disabilities” 2014

2NYU Langone Medical Center Comprehensive Epilepsy Center Website, “Epilepsy and the Developmentally Disabled”

3Epilepsy Foundation of Metropolitan New York Website, “FAQ-Epilepsy and Developmental Disabilities” 2014

4Journal on Developmental Disabilities, Volume 10, Number 2, “Epilepsy and Developmental Disabilities”

5Epilepsy Foundation of Metropolitan New York Website, “FAQ-Epilepsy and Developmental Disabilities” 2014

6NYU Langone Medical Center Comprehensive Epilepsy Center Website, “Epilepsy and the Developmentally Disabled”

7Journal on Developmental Disabilities, Volume 10, Number 2, “Epilepsy and Developmental Disabilities”

8Epilepsy Foundation of Metropolitan New York Website, “FAQ-Epilepsy and Developmental Disabilities” 2014