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This guide, prepared by Johns Hopkins Medicine and Kennedy Krieger Institute, is for the parents, families, and caregivers of newly diagnosed children with epilepsy or a seizure disorder.
For many parents, families, and caregivers, learning that your child has epilepsy also called a seizure disorder can be overwhelming. A new diagnosis brings with it many things to learn about medical terms, new doctors and specialists, medicines, tests, and therapies to consider. You may also have concerns about your child’s safety, and questions about how to best manage your child’s condition. Fortunately, you are not alone.
Besides headaches, seizures are the most common neurological disorder in children. In fact, 1 in 26 Americans will experience a seizure at some point in their lives and about 1% of the population has a diagnosis of epilepsy. This brochure has been created by parents and doctors who understand how overwhelming it can be in the beginning of your journey with epilepsy. The information here is intended to introduce you to some important facts and terms, and to answer common questions many people have when their child has seizures. It is not intended to replace the advice and expertise of your child’s physician. We hope that this brochure will help you better communicate with your doctor and increase your confidence as the primary expert on your child.
Sometimes also referred to as “Seizure Disorder,” epilepsy is diagnosed after an individual has experienced two or more unprovoked seizures, meaning that the seizure did not occur as a result of a brain infection or, in children under the age of 7, a fever. Epilepsy can sometimes be diagnosed after a single seizure if a person’s EEG shows a high likelihood of seizure recurrence. Epilepsy is a neurological disorder. It is not contagious, and it is manageable.
Epilepsy can occur for a variety of reasons:
When your child has his/her first seizure, you need to take them to the emergency room to be evaluated. If the cause of the seizure is not apparent, a doctor will request tests to better understand your child’s seizure.
These test may include:
If your child is diagnosed with or suspected to have epilepsy, you will be referred to a neurologist (a doctor specializing in brain function) or an epileptologist (a neurologist that sub-specializes in epilepsy) for further treatment.
A seizure is a temporary abnormal firing of the cells in the brain. There are two type of seizures: focal seizures, or seizures that occur in part of the brain, and generalized seizures, or seizures that affect the entire brain. A single seizure does not usually require treatment because it is not uncommon for a person to experience one seizure and never have another one. Having one seizure does not mean that a person has epilepsy.
There are many different kinds of seizures. Your child may have just one kind or a combination of types. Different medicines are used to treat different types of seizures. Knowing about the variety of seizures can help you accurately communicate with your doctor to help determine the best course of treatment.
Focal Seizure: start in part of the brain. This is the most common type of seizure. Formerly called “partial seizures,” these usually last less than 5 minutes. Since the seizures originate in different parts of the brain the outward signs of the seizure can vary greatly from person to person.
Focal Seizure without alteration in awareness: A person remains awake and alert but may have symptoms that affect their senses, such as seeing or hearing things that are not there. Unusual feelings, like dejà vu, sudden fear or anger can also occur. Sometimes simple partial seizures precede other types of seizures and are called “auras.”
Focal Seizure with alteration in awareness: An individual may be unresponsive to touch or sound or exhibit unusual movements such as picking at clothing or lip smacking called automatisms. Sometimes the seizure will generalize(spread from part of the brain to all of the brain).
Generalized Seizures: Seizure activity occurring in the entire brain at once.
Tonic-Clonic: Formerly called “grand mal,” this seizure involves the entire brain. A person may experience stiffening and rhythmic jerking of the arms, legs, and torso. Shallow breathing and bluish discoloration of the skin and lips may occur. S/he may bite their tongue and/or become incontinent. Afterwards a person is often confused or tired and may go into a deep sleep. This recovery time after a seizure is referred to as the “postictal” state.
Tonic: The body, arms, and/or legs make sudden stiffening movements and the face may grimace. A person may lose balance and fall if they were standing when the seizure started.
Absence: Formerly referred to as “petitmal” seizures, absence seizures generally last less than 10-15 seconds. During an absence seizure, the person seems temporarily“blank” and then returns back to themselves right away. Sometimes they will demonstrate chewing or eye movements while appearing otherwise unresponsive. Typically, children having this type of seizure will experience dozens per day and it can be misinterpreted as behavior associated with ADHD.
Drop or Astatic: A sudden loss of consciousness and muscle tone, a child may drop just their head, or their entire body might fall to the ground. These are often brief with a quick recovery.
Myoclonic: Myoclonic seizures involve sudden, “lightening fast” involuntary muscle movements or jerks. They can appear singly or in clusters.
Nfantile Spasms: Occurring in clusters, a baby’s trunk suddenly bends over while the arms extend outward. This severe form of epilepsy must be treated quickly to reduce the risk of developmental problems.
Epileptic Encephalopathies: In rare cases, seizure activity in the brain (as shown on an EEG) may lead to problems with language, attention, social function and other cognitive abilities. This activity does not present with outward “physical” symptoms as in other seizure types.
Though they may look scary and can be disruptive, most seizures do not have adverse effects. Most people with seizures enjoy very normal lives. However, to keep your child as safe as possible, there are some safety precautions to be aware of.
Taking care of a child with a medical condition can sometimes take extra care and knowledge. Knowing what to do when your child has a seizure is both important and empowering. See the Seizure First Aid box below, and be sure to talk to your doctor about what to do during your child’s seizures.
Tip: Know Seizure First Aid:
Following these basic instructions can help to keep a person having a seizure safe.
Always talk to your doctor first for information and answers to questions, but it can also be good to get in touch with organizations created to support and advocate for individuals with epilepsy.
Here are just a few of the many helpful resources available:
Ask your physician if there is a Resource Center where you are currently receiving medical services.
The Epilepsy Therapy Project website has physician-curated information www.epilepsy.com
Private and non-profit organizations that work to provide epilepsy information and advocacy, such as:
This resource created by Kennedy Krieger Institute