Nearly half a million children in the U.S. have epilepsy — a neurological disorder that involves recurrent seizures caused by abnormal electrical activity in the brain. However, not all seizures are caused by epilepsy. It’s important to work with a neurologist to get a firm diagnosis for your child, so you can find out the best ways to manage and treat childhood epilepsy.
If your child experiences severe seizures, getting a diagnosis is crucial. Unfortunately, there is no definitive test for an epilepsy diagnosis, and doctors rarely witness children experiencing seizures firsthand. Diagnosing childhood epilepsy syndromes typically involves several exams and tests that take place over multiple doctor visits.
With the proper diagnosis, there’s a good chance your child’s care team can find an epilepsy treatment that gives them some seizure control. The first step to identifying the cause of your child’s seizures is spotting a seizure when it happens.
There are many types of seizures your child could be experiencing. Some of them are easy to spot, but others can be tricky to identify. It’s important to know the signs of each type of seizure.
Also called partial seizures, focal seizures start in one part or side of the brain. If your child has a focal seizure, they may stare off into space and ignore their surroundings. Your child may also be alert but start jerking uncontrollably on one side of their body.
A seizure that affects the entire brain is called a generalized seizure. Your child may experience loss of consciousness and may jerk uncontrollably during these types of seizures. There are different kinds of generalized seizures.
Tonic-clonic seizures, which used to be called “grand mal,” are a serious type of generalized seizure. During a tonic-clonic seizure, your child will likely alternate between stiffening their limbs and twitching uncontrollably.
A child loses muscle strength during an atonic seizure. Your child’s head may drop forward and their eyelids may droop. If they are standing, they may fall to the ground.
Previously called “petit mal” seizures, absence seizures are generally brief. Your child may appear to be staring into space. Their eyelids may flutter rapidly, and they may stop or slow down the activity they are performing.
During a myoclonic seizure, a muscle or group of muscles have brief bursts of jerking motions. Your child will probably be alert and mentally unimpaired during this kind of seizure. If they speak, they may describe it as feeling like being shocked by electricity.
During a febrile seizure, your child may pass out and shake uncontrollably, typically for a period lasting just a few seconds to several minutes. These types of seizures are linked to fevers and high body temperature. They are usually harmless, causing no long-term issues.
This kind of seizure is often hard to detect, but it may indicate a serious condition. During an infantile spasm, your child will likely spread their arms, lean forward, and pull their knees close to their body for a second or two. These motions generally occur back-to-back and then stop.
A seizure lasting longer than five minutes is called status epilepticus. If a person has more than one seizure in five minutes, it also qualifies as status epilepticus. This condition is life-threatening and requires immediate medical attention.
If your child is experiencing a seizure, do not try to stop their movements, and never put anything in their mouth. Instead, place them carefully on the floor and roll them on their side. Check their behavior, and write down the time of the seizure and how long it lasted. This information is important for your doctor. If the seizure lasts more than five minutes, get emergency medical assistance immediately.
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If you suspect your child is having seizures, it’s important to take them to the doctor. They will ask you several questions to establish your child’s medical history to help find a diagnosis.
Your child’s doctor will first ask you and your child’s other caregivers to describe everything that happened before, during, and after the seizure. Share every detail you can remember. Important details include the following:
If your child can speak, the doctor will ask them how they felt before, during, and after the seizure.
After getting their medical history, your child’s doctor will likely perform additional tests or refer them to a pediatric neurologist or epilepsy center for in-depth testing. These tests may include neurological exams, blood tests, an electroencephalogram (EEG), and brain imaging scans.
Your child will be asked to perform a number of tasks to test their underlying neurology. These exams test movement, coordination, eye-tracking, speech, memory, and cognition.
Doctors use an electroencephalogram (EEG) to detect abnormalities in brain activity. Several sticky electrodes will be placed on a child’s head prior to an EEG. The child is usually monitored on video while the EEG is performed. If the child appears to have a seizure during the EEG, it may be correlated with the EEG findings to determine if the event that looks like a seizure is related to abnormal brain activity.
Technologies like computed tomography (CT) scans or magnetic resonance imaging (MRI) can show abnormalities in the brain’s structure. Additionally, MRI shows how areas in the brain communicate and the effects of seizure activity. Your child must remain still during imaging, but new technologies have reduced the time required for each scan.
There are a few types of epilepsy associated with more intense seizures. These types of epilepsy pose serious risks without medical care.
Dravet syndrome is a rare condition that causes severe, prolonged epileptic seizures that begin in the first year of life. Dravet syndrome is usually caused by a mutation to the SCN1A gene, which regulates electrical activity in the nervous system. People with Dravet syndrome experience developmental delays, cognitive impairment, and an increased risk of sudden unexpected death in epilepsy (SUDEP).
Seizures in Dravet syndrome often occur back-to-back and can be caused by increases in body temperature. A person with Dravet syndrome could have several types of seizures, including:
Read more about Dravet syndrome.
Lennox-Gastaut syndrome (LGS) is a rare form of epilepsy that can cause cognitive disabilities and intense seizures. LGS seizures usually start when the child is preschool age. LGS may be caused by a brain injury, developmental issues, or genetic disorders. People with LGS are considered at-risk for developmental delays that worsen as their seizure intensity increases.
Children living with LGS can experience multiple forms of seizures, including:
LGS is difficult to control. It is typically treated with a combination of AEDs and dietary changes. If seizures are not reduced, or medication side effects are too harsh, therapies like vagus nerve stimulation (VNS) — in which a device sends electrical signals to the brain — may help.
Read more about Lennox-Gastaut syndrome.
West Syndrome is a type of epilepsy that primarily causes infantile seizures that begin around 6 months of age. This rare epilepsy syndrome is usually caused by a brain injury or genetic disorders. It can also be caused by Lennox-Gastaut syndrome.
Survival rates are high for people with West syndrome, but most children with the disorder will have cognitive disabilities. Treatment typically includes the use of AEDs, and in some cases, adopting a ketogenic diet.
After you have a diagnosis, you can work with your child’s care team to design a treatment plan to meet their needs. Treatment may not help your child to become completely seizure-free, but medical care based on your child’s needs may help reduce the intensity and frequency of their seizures.
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