What is Lennox Gastaut Syndrome?

Has your child been diagnosed with Lennox Gastaut Syndrome? If so, you will likely be wondering what it means for them - and for you. In this article you’ll learn more about Lennox Gastaut Syndrome symptoms, diagnosis, treatment and support.

Although Lennox Gastaut Syndrome does not yet have a cure, there are many resources available to ensure your child – and your family - gets the support they need.

What is Lennox Gastaut Syndrome?

Lennox Gastaut Syndrome (LGS) is a rare condition that affects between 2% and 5% of children with epilepsy. It usually begins between the ages of two and seven. It causes children to have a variety of seizures that are very difficult to control. Almost all children with LGS have developmental delays. LGS is slightly more common among boys than girls.

Some reasons it might happen include:

• Problems with how the brain develops
• Infections such as meningitis
• West syndrome (infantile spasms)
• Certain genetic disorders that are not inherited
• Head injuries
• Strokes 
• A lack of oxygen to the brain before/during birth

For about a quarter of children, doctors don’t know why the child developed LGS. 

Is Lennox Gastaut Syndrome fatal?

Not exactly. People with LGS appear to have a higher risk of death than other people their age. This is most likely due to injuries from falls or experiencing status epilepticus. LGS on its own is not fatal.   

Lennox Gastaut Syndrome symptoms

There are many different symptoms of LGS and not all children have the same symptoms. It can be difficult for doctors to diagnose Lennox Gastaut Syndrome because there is still no medical consensus about exactly what it is. However, it is generally agreed that a child has LGS if:

• The child experiences multiple types of seizures
• They have cognitive problems (learning difficulties)
• They have a specific brain activity pattern on an EEG

How is LGS diagnosed?

To diagnose Lennox Gastaut Syndrome, the epilepsy treatment team need a few different pieces of information:

• Your child’s full medical history, including when the seizures began
• A Lennox Gastaut Syndrome EEG which will show up very specific brain wave patterns
• An MRI scan, which may show up damage to the brain

Lennox Gastaut Syndrome treatment 

LGS can be very difficult to treat, and your child will have the condition for life. There are several different Lennox Gastaut Syndrome treatment options:

• Anti-seizure medicine: Anti-seizure medication may reduce how often your child has seizures. But it’s important to know that people with LGS usually have several different types of seizures, so one medicine alone usually doesn't help stop them. LGS is unfortunately difficult to control with medication.
• Diet: Sometimes people with LGS may experience fewer seizures when they follow certain diets, such as the ketogenic diet.
• Devices: Some types of medical device may be used to help reduce the number of seizures a person with LGS has.
• Rescue medication: Sometimes people with LGS have long seizures which don’t stop on their own – something known as status epilepticus. Your child’s doctor may provide you with emergency rescue medication to stop longer seizures (anything lasting more than five minutes).

Speak to your doctor if your child’s current treatment plan isn’t helping to reduce the number or severity of their seizures. It might also be helpful to visit a specialized epilepsy center for more advanced support.

Read more: Guide to the main epilepsy treatment options

Supporting your loved ones

As your child grows up, there are several additional resources you may benefit from:

• Working with a social worker to explore resources available in your state
• Accessing social security and health insurance resources
• Getting help and support from organizations like the LGS Foundation

Although there is not yet a cure for Lennox Gastaut Syndrome, research and emerging drugs give hope that in time, people with LGS will gain better control of their seizures.