How is LGS Treated?

There is no cure for LGS but numerous treatments for seizures are available. The goal of seizure treatment in LGS is to minimize the seizures, treatment side effects, and the number of medications as well as to attain the best quality of life for the individual with LGS and their loved ones.

It is the LGS Foundation’s mission to fund research into new therapies for LGS. Learn about our research initiatives here. Below is more information about the treatment options available.

Watch: The Latest Treatment Options for LGS

Scott Perry, MD, Medical Director of Neurology & Genetics Epilepsy Center at Cook Children’s Hospital speaks on the latest treatments available for those living with Lennox-Gastaut Syndrome. Dr. Perry also offers insight on how your medical team can determine the best options for your loved one with LGS.

Treatments

There are numerous treatment types for seizures associated with LGS:

There are a number of FDA-approved medications that treat seizures associated with LGS. There are also many FDA-approved medications that treat specific seizure types found in epilepsy. Individuals with LGS are often on a cocktail of 3-5 medications to reduce or stop their seizures. In most cases. anti-seizure medications significantly reduce seizure frequency in those with LGS, but they do not completely eliminate seizures. The LGS Foundation is dedicated to searching for better treatments and cures for LGS.
 
All anti-seizure medications have significant side effects, including fatigue and sedation. Some medications have very specific side effects. Speak to your doctor about medication side effects before deciding on treatment.
Epilepsy surgery is any type of brain surgery where parts of the brain are removed, disconnected, destroyed, or stimulated to stop seizures. There are many different types of epilepsy surgeries. Which procedure is used depends upon the type of seizures presented, where they are localized in the brain, and the training and experience of the neurosurgeon.
 

Learn more about Epilepsy Surgery >

Neuromodulation is a type of technology that acts directly upon nerves. A device is implanted in a person and it delivers electrical impulses to alter nerve activity. The most common types of neuromodulation used in LGS are Vagus Nerve Stimulation (VNS), Responsive Neurostimulation (RNS), and Deep Brain Stimulation (DBS). All of these require some type of surgery to implant the device.
 

Learn more about Neuromodulation>

Changes in diet are a proven approach to help control seizures. The most commonly used dietary therapies to treat seizures in LGS are the Ketogenic Diet (KD), the Modified Atkins Diet (MAD), and the Low Glycemic Index Diet (LGI).
Individuals with LGS are also often on medications for the many LGS Associated Disorders (LAD). These include treatments for constipation, sleep problems, behavioral issues, muscle and mobility issues, and others.
 
Those with LGS often benefit from ongoing physical, occupational, and speech therapy. In school, they usually require an Individualized Education Plan (IEP), which allows the school curriculum to be targeted to their specific needs.
 
Given the high medical needs of persons with LGS, families often require some type of respite care. Working with a knowledgeable social worker is important to identify resources to support families.

Check out our LGS Learning and Resource Center pages on Treatment Options

Click here for more info

Clinical Trials in LGS

Research is ongoing to find novel, innovative treatments for LGS. Clinical trials are research studies performed in those with LGS. They scientifically evaluate a medical or surgical intervention. They are the primary way that researchers determine if a new treatment, like a new drug, diet, or medical device, is safe and effective in reducing seizures in those with LGS.

Learn more about Clinical Trials in LGS →

Costs

A 2015 report showed that average yearly medical costs are about $64,000 for LGS. This number depends on insurance status. Hospitalizations and home health services are big expenses. Many medication options are generic and relatively inexpensive. compared to hospitalizations and chronic care. Newer medications, such as cannabidiol, are more expensive but are generally covered by insurance.

Sometimes, a therapy is denied insurance coverage initially. However, working with a healthcare provider to appeal the decision can help.

Outlook

LGS always persists into adulthood. Certain types of seizures are more common in adults than others with LGS. Over time, those with LGS experience developmental slowing, plateauing, or regression. This culminates in moderate to severe intellectual disability in more than 90% of patients. Behavior disorders are common in childhood and adolescence.

Untreated seizures can lead to head injury and a higher risk of sudden death. LGS requires lifelong antiseizure treatment.

 

Thank you to the Child Neurology Foundation for allowing us to adapt this article for this site.

Authors: Shaun Ajinkya, MD; Elaine Wirrell, MD,  Mayo Clinic – Rochester, Minnesota Reviewed: April 2021

The information here is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. The content provided is for informational purposes only. LGSF is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health related diagnosis or treatment options.

Updated 8/27/22

Also in this section