Your story gives me so much hope. My little boy is 6 and has been struggling with seizures for about a year and a half. After so many failed treatments, doctors and seizures, his doctor has diagnosed him with Lennox Gastaut Syndrome. He was just like any other child and then when the seizures began, he lost everything that he had learned in school and many memories were lost. It is so devastating. Thanks for sharing your story.
i just watched your video, I am so happy charlie is doing well. my son had lgs. in 2007 the same thing happened to corey - he was 3 at the time. we thought he was choking but was having a seizure. he then started having 100 drop seizures a day. corey was on many meds but our doc gave him a steroid treatment in feb 2008. this experimental treatment worked. corey has been seizure free for 3 years. coreys birthday is today he is 8 years old and doing great. i will pray for charlie
What a wonderful story to share! I am so pleased for Charlie and your whole family. My son Ben has an almost identical story (he is now 8). His Lennox Gastaut developed at the age of 3 and he too was having up to 150 seizures a day. The worst were the drop seizures. Ben has now been seizure free for over 2 years and had a clear EEG as well. Seeing your video has made me more confident to risk reducing Ben's medications. He takes 3 types which I have been scared to reduce, Now I can be brave xxx
God Bless you and your wonderful family. My daughter was diagnosed with LGS at 2. She is now 12 and still having many seizures.(grands & petit) We have done many meds, VNS, Keto diet. Some level of control has come and gone over the years. I watched you video and was trying to pinpoint some highlights from your report on his treatments. What is it treatment(s) is it that you feel helped Charlie to become seizure free. Do the neurologist still have him with a dx of LGS? Ty 4 your time.
Un abrazo fuerte para todos los que ven este video. Por tener un hijo con este sindrome me sacaron de mi trabajo, que indolentes verdad? Tenemos que luchar por los derechos laborales de los padres que tienen hijos con discapacidad. Gracias
Hola, mi hijo tiene lennox. el tiene 20 años, epilepsia refractaria al tratamiento, usa valbula de pudenz y tiene retardo mental, puede caminar, hacer cariños, es delgado pero tiene fuerza y le guata la musica del youtube
i'm glad i found this video. my 2 year old son has tuberous sclerosis syndrome, severe epilepsy, wolff-parkinson white syndrome, and west syndrome. his docs think he has developed LGS so we have a grueling time of tests coming up. i'm so glad things are going well xxx
Thank you for this, my little girl has been having seizures for years and we had the 72 hour EEG video done, we just thought she was autistic with mental challenges, but the doctor just told us LGS. Thank you for having this on!
I am believing God for a miracle for my son, Zachoree, who was diagnosed with Infantile Spasms and then later LSG. I definitely know what you have gone through, and I am grateful for the miraculous recovery. I am confident Zach will be the 4 % also. Be Blessed!
Our oldest daughter has lgs and like your son started seizing at 26 months
tlcjanna2 1 month ago
Vigabatrin for this little fella :)
Artehipocratico009 2 months ago
Your story gives me so much hope. My little boy is 6 and has been struggling with seizures for about a year and a half. After so many failed treatments, doctors and seizures, his doctor has diagnosed him with Lennox Gastaut Syndrome. He was just like any other child and then when the seizures began, he lost everything that he had learned in school and many memories were lost. It is so devastating. Thanks for sharing your story.
robynwalker27 3 months ago
i just watched your video, I am so happy charlie is doing well. my son had lgs. in 2007 the same thing happened to corey - he was 3 at the time. we thought he was choking but was having a seizure. he then started having 100 drop seizures a day. corey was on many meds but our doc gave him a steroid treatment in feb 2008. this experimental treatment worked. corey has been seizure free for 3 years. coreys birthday is today he is 8 years old and doing great. i will pray for charlie
paulacoreyful 5 months ago
dgbyd did you Send the Email Message to Charlies Mom Yet?????
tiff1234ization 6 months ago
What a wonderful story to share! I am so pleased for Charlie and your whole family. My son Ben has an almost identical story (he is now 8). His Lennox Gastaut developed at the age of 3 and he too was having up to 150 seizures a day. The worst were the drop seizures. Ben has now been seizure free for over 2 years and had a clear EEG as well. Seeing your video has made me more confident to risk reducing Ben's medications. He takes 3 types which I have been scared to reduce, Now I can be brave xxx
salpaloz 8 months ago
@salpaloz I am so happy for you and your family!!!! Trust your instincts and God Bless!!!
tmoss34341 6 months ago
god bless u and your family my little boy has LGS its very hard and my little boy is on 4 diffrent meds
faithh100 11 months ago
também já tive essa sindrome rara, mas graças a Deus fui curada a muito tempo. E hoje em dia dou glorias a Deus! thank you God
MARCELA7579 1 year ago
What worked?
andersondexter 1 year ago 2
Comment removed
autismadvocate66 1 year ago
God Bless you and your wonderful family. My daughter was diagnosed with LGS at 2. She is now 12 and still having many seizures.(grands & petit) We have done many meds, VNS, Keto diet. Some level of control has come and gone over the years. I watched you video and was trying to pinpoint some highlights from your report on his treatments. What is it treatment(s) is it that you feel helped Charlie to become seizure free. Do the neurologist still have him with a dx of LGS? Ty 4 your time.
autismadvocate66 1 year ago
@autismadvocate66 my daughter has lgs , man i was cry ing when i found out about this. she has a vns takes depoke 250 mg ex r.
MrXpumkinheadx 1 year ago
This has been flagged as spam show
SON VERDADEROS ANGELES DE DIOS
faucor 1 year ago
SON VERDADEROS ANGELES DE DIOS
faucor 1 year ago
Un abrazo fuerte para todos los que ven este video. Por tener un hijo con este sindrome me sacaron de mi trabajo, que indolentes verdad? Tenemos que luchar por los derechos laborales de los padres que tienen hijos con discapacidad. Gracias
Bonny441 1 year ago
poor kid
inbredagogo 1 year ago
Hi, from CHILE, my Hija, tendria un lennox gastaut, she can´t talk
faucor 2 years ago
@faucor
Hola, mi hijo tiene lennox. el tiene 20 años, epilepsia refractaria al tratamiento, usa valbula de pudenz y tiene retardo mental, puede caminar, hacer cariños, es delgado pero tiene fuerza y le guata la musica del youtube
Bonny441 1 year ago
i'm glad i found this video. my 2 year old son has tuberous sclerosis syndrome, severe epilepsy, wolff-parkinson white syndrome, and west syndrome. his docs think he has developed LGS so we have a grueling time of tests coming up. i'm so glad things are going well xxx
giaafterdark 2 years ago
Amy- this is truly an amazing video!
lgsfoundation 2 years ago
Thank you for this, my little girl has been having seizures for years and we had the 72 hour EEG video done, we just thought she was autistic with mental challenges, but the doctor just told us LGS. Thank you for having this on!
girlchristian1 2 years ago
I am believing God for a miracle for my son, Zachoree, who was diagnosed with Infantile Spasms and then later LSG. I definitely know what you have gone through, and I am grateful for the miraculous recovery. I am confident Zach will be the 4 % also. Be Blessed!
sherryjames119 2 years ago
My 3 yr old son was just diagnosed with LGS last month.
Punkin415 2 years ago
Wow, Amy. I had no idea. What an amazing story!
angconiglio 2 years ago
you've been so blessed!!
carodiaz8710 2 years ago