No matter how old your loved one is or where they are in their treatment journey, it's never too late to get them a specific diagnosis. The sooner you have a name for what they're living with, the sooner your doctor will know how to best care for them.
Getting a specific diagnosis
By confirming a diagnosis early on, your doctors can work with you to develop the right treatment plan. Unrecognized and/or uncontrolled seizures are linked to developmental delays, learning and behavioral disorders, and other negative long-term outcomes. Check out our seizure library for help with recognizing different types of seizures.
“It was his adult neurologist who finally made the diagnosis of LGS. With a proper diagnosis, he was able to get on medications that worked better for him.”
— Annette, parent of a loved one living with LGS
Diagnosis can be challenging
Evolving symptoms
Even if symptoms shift or appear slowly, each sign brings you one step closer to the answers and support your loved one deserves.
Symptoms may match more than one condition
LGS can look similar to other conditions at first, but with careful testing and evaluation, your doctor can better pinpoint the right path forward.
Multiple causes
There are several factors that may cause a person to develop LGS, such as a brain injury early in life, abnormal brain function in the womb, certain genetic mutations, brain infections, metabolic disorders, or immune disorders. In some cases, the cause may even be unknown.
Confirming diagnosis
LGS itself is not genetic, but it can appear alongside genetic conditions. In some cases, a genetic mutation may be the underlying cause of seizures that later develop into LGS. While LGS isn’t inherited, genetic testing may help your doctor better understand what’s driving the seizures and guide the path to diagnosis.
What kind of testing is available for LGS?
REST-LGS tool
Your doctor may use an expert-approved tool like the Refractory Epilepsy Screening Tool for LGS (REST-LGS) to help assess the likelihood of an LGS diagnosis.
Genetic testing
There are many different genes that can be associated with LGS. Genetic testing may help identify if your loved has one of these genes to support a diagnosis of LGS, or may help identify other underlying conditions that could be contributing to seizures.
Electroencephalograms (EEGs)
Some EEG results like a slow spike-wave pattern (SSW) are a strong indicator of LGS.
Ready to talk to your doctor about LGS? First, answer a few questions. Your responses will help create a personalized discussion guide you can use to get the conversation started.
“There was a sense of relief after getting a diagnosis and finally having some understanding of what this is and what options might look like for treatment.”
— Jon, parent of a loved one living with LGS
What's next after diagnosis?
There are still potential treatment options out there for uncontrolled seizures that might work for your loved one.
Medications
Medications, including antiseizure medications (ASMs)*, are used to treat seizures. Certain rescue medications may be used for seizures that last longer than 5 minutes or occur very close together without breaks.
Learn about a specific medication for LGS
*It may be necessary to try more than one ASM at a time to effectively reduce the number of seizures because these drugs may work through different targets in the brain. These therapies may take a while to start working, and it is not uncommon for people to be on multiple therapies at a time.
Dietary therapies
Some people try dietary approaches, such as the high-fat, low-carb, medical ketogenic diet, which is carefully monitored by a dietitian.
Devices and surgery
For some people, the use of implanted devices or surgical methods may be recommended.
More to explore:
Learn more about the different types of seizures
Talk to your doctor about LGS
