Glossary​

Resources & FAQs

If you're seeking more clarity around getting a diagnosis, these resources and FAQs are here to guide and support you along the way.

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FAQs about LGS

Downloadable resources

Advocacy groups

Financial assistance information

FAQs about LGS

Here are the answers to some common questions caregivers have about LGS and more.

A diagnosis of LGS can help you and your doctor open the door to treatment options, access to foundations, grants, or other financial assistance, a supportive community of others who can relate to your experiences, and much more.

Yes. Even if the signs of LGS have been missed or overlooked in childhood, it’s not too late to get a specific diagnosis. And it’s never too late to get your loved one the treatment they need and deserve.

Yes. Because LGS encompasses a range of epilepsy characteristics, it can be diagnosed alongside autism, hyperactive disorders, other seizure syndromes, and neurological conditions like cerebral palsy and tuberous sclerosis complex (TSC). It’s also seen in people who show developmental delays both mentally and physically.

Any doctor can diagnose LGS, but neurologists and epileptologists typically have a deeper understanding of epilepsy and can make a more informed diagnosis.

The questionnaire on this site is designed to help caregivers, and others who know someone living with epilepsy, to recognize the possible signs of LGS. It’s a version of the Refractory Epilepsy Screening Tool for LGS (REST-LGS) which was originally created by epilepsy experts so that healthcare professionals could identify and treat LGS in their patients. The screener involves a few questions that help determine if it’s unlikely, possibly, or likely LGS.

An EEG is a test that uses small metal discs placed on the scalp to measure electrical activity in the brain. A slow spike-wave pattern (SSW) and other abnormalities like paroxysmal fast rhythms may be something your doctor could tell you if there is a potential LGS diagnosis.

Downloadable resources

As a caregiver, you help other people day in and day out, but sometimes you need a little help, too. That's why we've highlighted some of the top caregiver-recommended tools and resources, so you can feel supported and prepared every step of the way.

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Lennox-Gastaut syndrome (LGS) brochure

Lennox-Gastaut syndrome (LGS) brochure

A PDF with detailed educational information and resources to help you and your loved one understand and navigate an LGS diagnosis.

Download brochure

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Individualized Education Plan (IEP) worksheet

Individualized Education Plan (IEP) worksheet

Tips to help you navigate the annual goals and support services designed for each individual’s needs, ranging from speech therapy and counseling to curriculum modifications and mobility amenities.

Download worksheet

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Seizure readiness kit

Seizure readiness kit

Advice from a caregiver on how to put together a personalized seizure readiness kit to help you feel more prepared.

Download kit

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Seizure Action Plan (SAP) template

Seizure Action Plan (SAP) template

Use this template to create a personalized SAP, or set of guidelines on how to respond during a seizure. It includes health and medical information specific to the person and aims to help others recognize seizures and take the appropriate steps.

Download template

Advocacy groups

Advocacy groups are a great way to connect with other families who may be going through what you're going through–fostering a sense of community and support that brings families together to share advice, participate in events, learn about financial resources, or simply feel at ease in each other's company.

Financial assistance information

A number of programs are available to help you gain access to education, financial assistance, and home healthcare services. If you don’t qualify for Medicaid, Supplemental Security Income (SSI), or Social Security Disability Insurance (SSDI) benefits, you can apply for a state waiver to get the support you need. We’ve put some helpful links all in one place.

SSI/SSDI

SSI and SSDI are programs that offer benefits to disabled people (including children) who have limited income and/or are unable to work due to their disability.

View SSI/SSDI website

Medicaid/State waivers

Medicaid provides health coverage to millions of Americans, including people with disabilities.

View Medicaid website

More to explore:

Learn about a treatment option for LGS

Treatment option

Talk to your doctor about LGS

Meeting with your doctor

Glossary/Tab/Desktop

Go to the seizure library to learn about specific seizure terms.

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Autism
  • A neurodevelopmental disorder that can exhibit characteristics such as deficits in social communication, repetitive behaviors, and restricted interests 
  • Autism is more common in males than females, with an estimated ratio of around 3:1 
Cerebral palsy
  • A neuromotor disorder caused by an injury to the developing brain before or shortly following birth 
  • Development of movement, muscle tone, and posture can be affected 
Developmental delays
  • Refers to when a child does not achieve developmental milestones in comparison to peers of the same age range 
  • Examples include lack of engagement with age-appropriate toys, speech delays, or other delays identified by a doctor 
Electroencephalogram (EEG)
  • A diagnostic test that measures electrical activity in the brain using small electrodes attached to the scalp 
  • It is commonly used to detect abnormalities related to epilepsy and other neurological disorders 
Epileptologist
  • A neurologist who has undergone specific training in the diagnosis and management of epilepsy 
  • Epileptologists focus on the management of patients with epilepsy 
Genetic mutation
  • A permanent alteration in the DNA sequence that makes up a gene 
  • Some genetic mutations are hereditary, while others occur spontaneously 
  • Certain mutations are linked to specific medical conditions, including some forms of epilepsy 
Immune disorders
  • Disorders that result from a dysfunction in the immune system, which may be overactive or underactive 
  • Some immune disorders are thought to contribute to the development of epilepsy and other neurological conditions 
Lennox-Gastaut syndrome (LGS)
  • Lennox-Gastaut syndrome (LGS) is a rare form of epilepsy that usually begins in childhood and is associated with multiple kinds of seizures
Metabolic disorders
  • A group of disorders that affect the body's ability to convert food into energy 
  • These disorders can be genetic and may lead to a variety of health issues, including developmental delays and neurological symptoms 
Neurologist
  • A medical specialist who diagnoses, manages, and treats disorders of the nervous system, including the brain, spinal cord, nerves, neuromuscular junction, and muscles 
  • Neurologists often serve as the first point of contact for patients with neurological symptoms 
Paroxysmal fast rhythms
  • Paroxysmal fast rhythms, also known as generalized paroxysmal fast activity (GPFA), are patterns of neural activity consisting of 8–26 Hz bursts of generalized rhythmic discharges 
  • Paroxysmal fast rhythms have traditionally been associated with Lennox-Gastaut syndrome 
Refractory epilepsy
  • May also be referred to as “uncontrolled,” “intractable,” or “drug-resistant” epilepsy 
  • Occurs when a person has failed to become (and stay) seizure free with adequate trials of 2 appropriately selected antiseizure medications 
Refractory Epilepsy Screening Tool for LGS (REST-LGS)
  • A questionnaire-based tool developed by experts to improve both the identification and treatment of patients with Lennox-Gastaut syndrome (LGS)
  • Helps providers to assess the likelihood that a patient has LGS based on four major symptoms and four minor features commonly associated with LGS 
Slow spike-wave pattern (SSW)
  • Refers to a pattern seen on an electroencephalogram (EEG) characterized by slow, high-amplitude spike-and-wave discharges 
  • This pattern is often associated with specific types of epilepsy, including Lennox-Gastaut syndrome (LGS)
Tuberous sclerosis complex (TSC)
  • Tuberous sclerosis complex (TSC) is a genetic condition characterized by the development of noncancerous tumors that may cause a range of symptoms, including seizures