Lennox Gastaut Syndrome LGS

"This Is LGS" - Brought to you by LGS Together

  • The Lennox-Gastaut syndrome (LGS) is a type of epilepsy with multiple different types of seizures, particularly tonic (stiffening) and atonic (drop) seizures.
  • Intellectual development is usually delayed and often worsens over time. Behavioral problems, including hyperactivity, agitation, aggression and autism, are common.
  • Lennox-Gastaut syndrome is a type of “epileptic encephalopathy.” This terms means that the frequent seizures and very abnormal EEG (electroencephalograph) activity worsens cognitive and behavioral problems.
  • The cause of the disorder is unknown in 1 out of 4 children.

For a child or adult to be diagnosed with Lennox-Gastaut syndrom, three key features must be present. These include the following.

Multiple Seizure Types
A Characteristic EEG Pattern

The EEG during wakefulness shows diffuse or widespread background slowing and slow spike-wave bursts. In sleep, a characteristic pattern, termed “generalized paroxysmal fast activity” is seen. This may sometimes correlate with subtle tonic activity.

Cognitive Impairment, Behavior Problems or Developmental Delay

Prior to seizure onset, 70-80% (or 7 to 8 out of 10) of children have a history of delayed development and neurological problems. When seizures begin, these problems are almost always seen and often get worse over time.

"Status epilepticus is a seizure emergency."
Family Support

Families of people with LGS should work closely with a social worker to find resources to maximize quality of life for their child. Respite help is also important for the family.

social worker with family
 

As the child grows older and ages out of school resources, other help will be needed. The social worker can help explore financial resources, such as social security and health insurance options, vocational or day programs, and residential or assisted living options, if appropriate.

Children with LGS also will need an Individualized Education Plan. Many may benefit from ongoing physical, occupational and speech therapy. It’s important to involve the school nurse and mental health resources early.

"We Can Help You Find Resources and Support"

Be Prepared When A Seizure Happens

The long-term prognosis for seizures, learning and behavior is worrisome. Seizures with LGS unfortunately do not respond well to seizure medications. Behavior problems can be very challenging in many people. Psychosocial needs of people with LGS and their families are critical to address early and on an ongoing basis, because the needs of the person with epilepsy and their family change over time.

  • Establish an epilepsy team early that includes epilepsy doctors, nurses, social workers, mental health providers, and rehabilitation specialists. An epilepsy center has a team of health care professionals who specialize in the diagnosis, care, and treatment of people with difficult to control seizures. Find an epilepsy center near you.
  • Getting support from other families living with LGS can be invaluable. Reach out to family organizations like the LGS Foundation for support, connection, resources and services.

Lennox-Gastaut Syndrome continues to present great challenges to children and adults with the syndrome, their families, and their caregivers. Much more research is needed to identify better therapies of all types.

New advances in seizure detection, recording, and alerting, as well as other safety and protection devices, are avenues that need further attention by families, health care providers, and researchers. These types of treatments and services can improve safety management and quality of life for people with LGS and their caregivers.

LGS Foundation improves the lives of people affected by Lennox-Gastaut syndrome through research, family support programs, events, webinars, conferences and other education.

National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) Lennox-Gastaut syndromeGS

From Industry

Learn about the role of seizure alerts and download the following fact sheet to determine the best fit for you or your loved one

Find specialty care at an epilepsy center

Watch this webinar recorded in December 2014 on Lennox-Gastaut Syndrome. The speakers were Patty Osborne Shafer RN, MN; David M. Ficker MD and Angel Hernandez MD.

Authored By:

Elaine Kiriakopoulos MD, MSc
Elaine Wirrell MD
Joseph I. Sirven MD
Patty Obsorne Shafer RN, MN

on Tuesday, September 03, 2019

Reviewed By:

Elaine Wirrell MD

on Wednesday, February 12, 2020

Resources

Epilepsy Centers

Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

Epilepsy and Seizures 24/7 Helpline

Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.

Tools & Forms

Download our seizure tracking app, print out seizure action plans, or explore other educational materials.