Epilepsy is a neurological disorder that affects the nervous system (Shafer, 2013). When a person has epilepsy they experience seizures, which are caused by disturbances in the electrical activity of the brain. According to the Epilepsy Foundation, the seizures in epilepsy may be related to genetics, a brain injury, immune, brain structure or metabolic cause, but typically the cause is unknown. Epilepsy is also known as a seizure disorder and is usually diagnosed after a person has had two seizures (or after one seizure with a high risk for more) that were not caused by some known medical condition (Shafer, 2013). Seizure medication is known to be the mainstay of epilepsy treatment, however there are other approaches people with epilepsy may consider such as surgery, dietary therapy, neurostimulation devices, complementary health approaches, and clinical trials.
Depending on the child’s stage of development, here are some key words you can use when explaining epilepsy to children:
• Seizures – There are different kinds of seizures, and all of them are caused by abnormal electrical activity in the brain. Your brain uses these signals to help us eat, read, draw, run, and play. When these signals are interrupted they cause a seizure (shaking, twitching). * More detail in coloring booklet located below in resources *
• Brain – the organ inside your head that controls all the parts of the body
• Electroencephalogram (EEG) – a test to see how your brain is working by putting stickers on your head
• Neurologist – a doctor who studies the nervous system
• Nervous System – tells your body to feel, breathe, move, and digest food
According to Kiriakopoulos and Shafer (2017) from the Epilepsy Foundation, there are three major groups of seizures known as:
- Generalized Onset Seizures
These seizures affect both sides of the brain at the same time.
Motor Symptoms – sustained rhythmical jerking movements (clonic), muscles becoming weak or limp (atonic), muscles becoming tense or rigid (tonic), brief muscle twitching (myoclonus), or epileptic spasms (body flexes and extends repeatedly).
Non-Motor Symptoms – brief twitches (myoclonus), typical or atypical absence seizures (staring spells) - Focal Onset Seizures
These seizures can start in one area or one group of cells in one side of the brain.
Motor Symptoms – jerking (clonic), muscles becoming limp or weak (atonic), tense or rigid muscles (tonic), brief muscle twitching (myoclonus), or epileptic spasms.
Non-Motor Symptoms – changes in sensation, emotions, thinking or cognition, autonomic functions (such as gastrointestinal sensations, waves of heat or cold, goosebumps, heart racing, etc.), or lack of movement (called behavior arrest). - Unknown Onset Seizures
When the beginning of a seizure is not known, or if the seizure is not witnessed (person lives alone or asleep at night).
Motor Symptoms – described as either tonic-clonic or epileptic spasms.
Non-Motor Symptoms – behavior arrest (movement stops and person may just stare).
Epilepsy Facts from the Epilepsy Foundation
• Nearly 65 million people are living with epilepsy around the world.
• Nearly 3.4 million people are living with epilepsy in the United States.
• One-third of the people with epilepsy live with uncomfortable seizures because existing medications do not work for them.
• 6 out of 10: Number of people with epilepsy where the cause is unknown.
Resources
- Websites
• https://www.epilepsy.com/
• https://www.aesnet.org/
• https://www.cureepilepsy.org/
• https://www.naec-epilepsy.org/ - Books
• Navigating Life with Epilepsy by David C. Spencer
• Living Well with Epilepsy and Other Seizure Disorders by Carl W. Bazil, M.D., Ph.D.
• Epilepsy Journal: Easily Track Seizures, Medications, Triggers & Side Effects by Medjournal Essentials
• Advanced Therapy in Epilepsy by James Wheless M.D., James Willmore M.D., and Roger Brumback M.D.
• Epilepsy (Therapeutic Strategies) 1st Edition by Jacqueline French M.D. and Norman Delanty
• Coloring booklet describing epilepsy to children (PDF): https://www.massgeneral.org/assets/MGH/pdf/Research/news/mythinkingcap_v11_ENGLISH_final.pdf - Applications
• Epsy: Seizure Log for Epilepsy
• SeizAlarm: Seizure Detection
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References
Kiriakopoulos, E. and Shafer, P.O. (2017). Types of seizures. Epilepsy Foundation. https://www.epilepsy.com/learn/types-seizures.
Shafer, P.O. (2013). About epilepsy: The basics. Epilepsy Foundation. https://www.epilepsy.com/learn/about-epilepsy-basics.