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Diagnosing Severe Epilepsy in Children

Posted on January 03, 2022
Medically reviewed by
Amit M. Shelat, D.O.
Article written by
Lorelei Tucker, Ph.D.

  • No single test exists to diagnose severe epilepsy in children, but a neurology team can pinpoint a diagnosis using a series of exams and tests.
  • Not all seizures are caused by epilepsy, but it’s important to know why your child is having seizures as soon as you identify the issue.
  • After a neurologist determines the type of epilepsy a child is experiencing, they can advise on treatments to help manage the condition.

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.

How Is Childhood Epilepsy Diagnosed?

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.

What Does a Severe Seizure Look Like?

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.

Focal Seizures

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.

Generalized Seizures

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

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.

Atonic Seizures

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.

Absence Seizures

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.

Myoclonic Seizures

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.

Febrile Seizures

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.

Infantile Spasms

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.

Status Epilepticus

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.

Are you caring for a child with epilepsy?
Click here to share your experience in the comments below.

Visiting Your Child’s Doctor

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:

  • When was the seizure, and how long did it last?
  • Is this your child’s first seizure? If not, how many have they had, were they similar, and how frequent are they?
  • Do they have any other medical conditions, and are they taking any medications?
  • Does your child have a family history of seizures?
  • Where did the seizure occur? What was happening before it?
  • What was your child doing at the time?
  • Was your child aware or partially aware during the episode? Did they show speech or cognitive impairments before or after?
  • Did it happen shortly after they stood up?

If your child can speak, the doctor will ask them how they felt before, during, and after the seizure.

Testing Methods

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.

Neurological Exam

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.

Blood Tests

Blood tests may be performed during your child’s examination. Blood work can test for such factors as issues with your child’s blood sugar.

Electroencephalogram

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.

Brain Imaging

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.

Which Forms of Epilepsy Cause Severe Childhood Seizures?

There are a few types of epilepsy associated with more intense seizures. These types of epilepsy pose serious risks without medical care.

Dravet Syndrome

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:

  • Febrile seizures
  • Myoclonic seizures
  • Absence seizures
  • Atonic seizures
  • Focal seizures

Although Dravet syndrome is resistant to treatment, it can be managed with antiepileptic drugs (AEDs), other medications like Epidiolex (cannabidiol), and a ketogenic diet.

Read more about Dravet syndrome.

Lennox-Gastaut 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:

  • Tonic seizures
  • Atonic seizures
  • Absence seizures
  • Focal seizures
  • Myoclonic seizures
  • Tonic-clonic seizures
  • Infantile seizures

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

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.

Work With Your Care Team

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.

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 100,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

Are you caring for a child with epilepsy? Share your experience in the comments below, or start a conversation by posting on your Activities page.

References
  1. Epilepsy Fast Facts — Centers for Disease Control and Prevention
  2. What Happens During a Seizure? — Epilepsy Foundation
  3. Causes of Epilepsy In Childhood — Epilepsy Foundation
  4. Diagnosis and Management of Epilepsy — Canadian Medical Association Journal
  5. Seizures and Epilepsy in Children — Johns Hopkins Medicine
  6. Types of Seizures — Epilepsy Foundation
  7. Partial Epilepsy — StatPearls
  8. Focal Seizures — Johns Hopkins Medicine
  9. Seizure — StatPearls
  10. Generalized Tonic-Clonic Seizure — StatPearls
  11. Generalized Seizures — Johns Hopkins Medicine
  12. Atonic Seizures — Epilepsy Foundation
  13. Absence Seizure — StatPearls
  14. Juvenile Myoclonic Epilepsy — StatPearls
  15. Febrile Seizure — Mayo Clinic
  16. Febrile Seizure — StatPearls
  17. Infantile Spasms: Little Seizures, Big Consequences — Epilepsy Currents
  18. Epilepsy Symptoms — NHS
  19. Management of Status Epilepticus in Children — Journal of Clinical Medicine
  20. Diagnostic Approach of Epilepsy in Childhood and Adolescence — Maedica: a Journal of Clinical Medicine
  21. Seizure Safety — Nationwide Children’s Hospital
  22. My Health Care Team — Epilepsy Foundation
  23. Epilepsy in Children: From Diagnosis to Treatment With Focus on Emergency — Journal of Clinical Medicine
  24. Precision in Pediatric Epilepsy — F1000 Research
  25. Neuroimaging in Pediatric Epilepsy — Brain Sciences
  26. Dravet Syndrome — Epilepsy Foundation
  27. Lennox-Gastaut Syndrome (LGS) — Epilepsy Foundation
  28. Vagus Nerve Stimulation — Mayo Clinic
  29. West Syndrome — National Organization for Rare Disorders
  30. Causes of Epilepsy in Childhood — Epilepsy Foundation
All updates must be accompanied by text or a picture.
Amit M. Shelat, D.O. is a fellow of the American Academy of Neurology and the American College of Physicians. Review provided by VeriMed Healthcare Network. Learn more about him here.
Lorelei Tucker, Ph.D. has a doctorate in neuroscience from Augusta University. Learn more about her here.

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