My daughter, now 26 (DX 3) has LGS When initially diagnosed we were told that by age 5 she would be in a wheelchair and unable to do basic. Although she proved them wrong she does have problems with speech and walking she has on the past 5 years has started to write basic words even though she can't read them.
My 9yo (dx 3yo) has been on 6 different medications and continues to have seizures for the past several months, sometimes hundreds per day. We are now going to start the process for VNS.
LGS is very difficult to treat. Our daughter has been on so many medications. I call it the "medication game." Epidiolex helped for a while but its efficacy diminished over time. I have unlimited empathy for individuals and parents that deal with LGS. The genetic sequencing mentioned in this video looks interesting.
LGS needs a cure. My son has it (he's 10) and he's not able to act like a typical 10 year old because of it. I can't find any resources or communities to turn to in order to help my son
![ไลฟ์สุ่ม iPhone 295 บาท... โกงมั้ย?[ โกงมั้ยครับ ep.97 ] | DOM](http://i.ytimg.com/vi/gdstHEE4UUE/mqdefault.jpg)
My 15 year-old granddaughter passed away on 02-12-2023 from LGS. My heart is forever broken.
Im so sorry about your lost
Thanks LGS for your extraordinary work.
This was very informative and I am so appreciative of the family for sharing their story 🤗🤟🏼
My son have this syndrome Lord help him to live in normal way of life 😭😭😭😭
My daughter, now 26 (DX 3) has LGS When initially diagnosed we were told that by age 5 she would be in a wheelchair and unable to do basic. Although she proved them wrong she does have problems with speech and walking she has on the past 5 years has started to write basic words even though she can't read them.
My 9yo (dx 3yo) has been on 6 different medications and continues to have seizures for the past several months, sometimes hundreds per day. We are now going to start the process for VNS.
LGS is very difficult to treat. Our daughter has been on so many medications. I call it the "medication game." Epidiolex helped for a while but its efficacy diminished over time. I have unlimited empathy for individuals and parents that deal with LGS.
The genetic sequencing mentioned in this video looks interesting.
My son just started Epidiolex. He was on Vigabatrin for most of his life
LGS needs a cure. My son has it (he's 10) and he's not able to act like a typical 10 year old because of it. I can't find any resources or communities to turn to in order to help my son
Where are you located? My son is 8 and was diagnosed with LGS this past March but symptoms began Oct. 2022.
@@alishajennings2013 I'm in Florida. Orlando