What Is Lennox-Gastaut Syndrome?

Tracy Dixon-Salazar, PhD, Executive Director of the Lennox-Gastaut Syndrome (LGS) Foundation, gives an overview of the disease and what the foundation is doing to help this patient community.
As Dr. Dixon-Salazar explains, LGS is a rare neurological condition that usually begins in childhood. It is characterized by multiple types of seizures and intellectual disability. LGS patients often have multiple seizures per day; sometimes hundreds of times that are treatment-resistant. The condition is not congenital. It can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection, and inherited degenerative or metabolic conditions. In about one-third of cases, no cause can be determined.
Dr. Dixon-Salazar notes that the LGS Foundation is primarily focused on providing patient and family support, which is especially important in LGS as it takes a huge emotional toll on the family.
To learn more about LGS and other rare neurological disorders, visit checkrare.com/diseases/neurology-nervous-system-diseases/

[@ZinnRealist]

Thank you for providing this video. My son will be 50 years old in July. He was diagnosed with myoclonic seizures at 14 months of age. He had so.... many each day that I lost count. He has been through many different forms, absence(petit mal), tonic(grand mal), and more. He has been diagnosed with Lennox-Gastaut syndrome for many years. His seizure activity is generalized, not focal. He is has been on many different seizure meds including Vegas Nerve Stimulator. Intractable. He is also non-verbal, has OCD, and, as part of the Lennox-Gastaut syndrome package, has behavioral issues. My wife and I are closing in on 80 years of age. Our fear is not our deaths, but our son's future without us as advocates. There is no one to take over when we are gone. Our son is in a group home (one-on-one,7x24). His care givers are great, but there is a frequent turn over for various reasons. Life is difficult!

[@digoxinsmalldose173]

My allah take care of your son

[@digoxinsmalldose173]

May allah take care of your child ..

[@ayushkd9978]

Hello, sir! I don't know who you are but I am sure you and your wife are amazing human beings.

[@1Lilbike]

I pray y’all are still alive and doing okay🖤

[@ZinnRealist]

@@ayushkd9978 Thank you. We do not feel amazing, just doing what a parent does.

[@tajuthemaker]

Studying EEG currently and WOW, I did not know LGS was so destructive, that's scary. My eyes bulged listening to you speak about it.

[@rebeccawilson5465]

My son has LGS my doctor said he will not make it to 10yrs. He is 31yrs. I am very happy he is with us now.

[@beefy32]

Surprised he said that as as the biggest danger from LGS is accidental death. Death from seizures themselves is very very rare! Many people live into their 50s and 60s with LGS.

[@dajinhan7172]

I would say that if u wrote a book about unknown lgs to new parents. There would be two pages. First page. What is wrong. Second, what to do. Ur description is so right on. It does not add the pain. But the info can help that. Really good

[@pestisdeathbird5058]

Thank you for making this video! My son has LGS and I was unaware of the LGS Foundation! Going to look for more information and see where to sign up. I've been dealing with taking care of my son alone for almost 9 years. He currently takes Sabril and seems to be helping him

[@beefy32]

Have you looked at the carnivore diet which is basically a ketogenic diet. I am looking after a 43 year old man who has LGS and is non verbal. He is on a high fat low carb diet with VNS and seizures are 1-3 a day. I have heard that going full carnivore dramatically helps reduce seizures. Also it is worth having a med review. My late partner had silent (absent) seizures which meds helped however when she did have seizures they became full on motor seizures.

[@dominikdurma9697]

Hi, what do you do to help your daughter? Any specific methods to ease symptoms?

[@ralphmutonyi6086]

ask your community pharmacist about a drug called rufinamide

[@daniellekremer876]

Hello! I have an adult cousin with LGS. I would love to put my aunt in touch with a support of some sort. She has tried nearly every type of treatment but honestly would benefit from a contact or group in a similar situation. Is there anything you can guide me to that I can direct her to? Email etc?