Does he have these everyday all day? My daughter is 4 months old and is displaying similar body actions but hers last longer and she goes so red in the face & both eegs have come back normal. Thanks
We don't know how he will be affected long term. He is now almost 3 and does have a speech delay. He was walk and talk, but still only speaks 1-2 words at a time. Some kids who have IS never learn to walk or talk, others go on to lead totally normal lives. Jack will start developmental pre-school soon to hopefully help him catch up and go into a normal kindergarten class when he turns 6.
I dont know how I got here, but regardless of what your little boy has, he is absolutely gorgeous, I hope and Im sure he will have a wonderful fulfilled life, Jah bless little one!
Thank you. He is now almost 3 years old! It's crazy, they grow so fast. Sabril got rid of his infantile spasms very quickly. Unfortunately he started having simple partial seizures not long after. Those were unresponsive to any med. They were greatly reduced with the ketogenic diet but he eventually ended up having resection surgery. That helped, but didn't stop his seizures completely. His speech is about 6-9 months delayed, but is making great strides. He's a wonderful kid!
He had an EEG to diagnose the Infantile Spasms. For the TSC he had a brain MRI, heart echo, and was looked at under a woods lamp. Do a google search for TS Alliance to get more info about TSC.
@kubala98 I know its been a while since you posted this so I hope you will view this soon. I just witnessed spasming from my son a couple nights ago. I signed up for an account on Youtube specifically to post the video of him. We have an appointment with a neurologist tomorrow. I was wondering what your experience was like with your son. Is he doing well now? Does my son's video look similar to what kept happening to yours?
@emilytingey1024 He just turned 2 and is doing well. On track developmentally and is now having partial seizures instead of IS. He has Tuberous Sclerosis Complex (AKA: TSC) that is causing his seizures. He is on the ketogenic diet which is the best treatment we've found so far, though it still hasn't stopped the seizures.
I didn't see any videos of yours. Have you posted them yet?
@kubala98 I posted a video and had my friend (who is also a new mother) watch it and she advised that i delete it and do another one because i was changing his diaper while he was having the spasms and every now and then you could catch glimpses of the male anatomy. She said some might accuse me of child porn so i deleted it. I'm going to try to upload another one i just took of him, I would love it if you could watch it and comment.
It took a while for the Pedi to believe me that something was going on, that's why I kept video taping. I think it was a total of about 3 weeks before he was diagnosed and another week before treatment started to work.
soo what happens? it look likes his mucsels are contracting then releasing?
DucksInParadise 1 week ago
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So cool! I hope he's gonna die soon! :D
Keep posting videos of him hahahaha
BabyKiller176 2 weeks ago
Does he have these everyday all day? My daughter is 4 months old and is displaying similar body actions but hers last longer and she goes so red in the face & both eegs have come back normal. Thanks
Mummytobexo 2 weeks ago
It's terrible seeing him so upset. Do the spams cause him physical pain?
yoadrie 2 weeks ago
We don't know how he will be affected long term. He is now almost 3 and does have a speech delay. He was walk and talk, but still only speaks 1-2 words at a time. Some kids who have IS never learn to walk or talk, others go on to lead totally normal lives. Jack will start developmental pre-school soon to hopefully help him catch up and go into a normal kindergarten class when he turns 6.
kubala98 2 weeks ago
@kubala98 I'm so glad to hear he's doing better and has a bright future!
yoadrie 2 weeks ago
Oh poor baby. God bless you all.
elibeth121 2 weeks ago
I dont mean this in a rude way at all, but will he be handicapped as he gets older? or will this affect him during his school life? Just curius..
LiveLifeBabyGirl 2 weeks ago
I dont know how I got here, but regardless of what your little boy has, he is absolutely gorgeous, I hope and Im sure he will have a wonderful fulfilled life, Jah bless little one!
TeMauriOra 3 weeks ago
I really cried lots i saw different videos but i couldnt hold my tears god bess ur son
Jmunoz2003 1 month ago
Thank you. He is now almost 3 years old! It's crazy, they grow so fast. Sabril got rid of his infantile spasms very quickly. Unfortunately he started having simple partial seizures not long after. Those were unresponsive to any med. They were greatly reduced with the ketogenic diet but he eventually ended up having resection surgery. That helped, but didn't stop his seizures completely. His speech is about 6-9 months delayed, but is making great strides. He's a wonderful kid!
ThumbInMouth 1 month ago
Aww, poor little guy. It's doubly bad because it obviously upsets him, too. I hope he continues to improve...he's a doll. : )
jillyz12 1 month ago
How is your son now? Hope he is healthy.
muxa2009 3 months ago
Awwwww! he looks so frightened :(
emilyexorcismzombie 3 months ago
ooh...he is so sad ! =((
bialgf 3 months ago
omg...just like my son..he has the west sydrmom ..he is 1 and a half year old and nothing can help him :(
miluma24 4 months ago
OMG poor baby...its hurting him or maybe just scaring him but wither way he is not comfortable at all!:(
tlwest21 5 months ago
He had an EEG to diagnose the Infantile Spasms. For the TSC he had a brain MRI, heart echo, and was looked at under a woods lamp. Do a google search for TS Alliance to get more info about TSC.
ThumbInMouth 6 months ago
i also post a video of him...i just heard about tuberous sclerosis from you..just now...and this made me want to know more about this case..thanks
momandbabyful 6 months ago
hi..i have a 10 month old baby..he has seizures just like your son's.. what are the tests he had before he was diagnosed to have tuberous sclerosis?
momandbabyful 6 months ago
Minha filha ainda nao tem um diagnostico definido....estamos sofrendo muito com isso.
fvcri 10 months ago
I´m from Brazil. God Blessed you
fvcri 10 months ago
Hello What is the treatment done? My daughter has these spasms like. Has been a diagnosis?
fvcri 10 months ago
does he have any brain damage? My son had the seazuries 5-7 times a day.
nicolettemcr1 2 years ago 2
No brain damage. The MRI was clear and he is on track developmentally.
kubala98 2 years ago
@kubala98 I know its been a while since you posted this so I hope you will view this soon. I just witnessed spasming from my son a couple nights ago. I signed up for an account on Youtube specifically to post the video of him. We have an appointment with a neurologist tomorrow. I was wondering what your experience was like with your son. Is he doing well now? Does my son's video look similar to what kept happening to yours?
emilytingey1024 10 months ago
@emilytingey1024 He just turned 2 and is doing well. On track developmentally and is now having partial seizures instead of IS. He has Tuberous Sclerosis Complex (AKA: TSC) that is causing his seizures. He is on the ketogenic diet which is the best treatment we've found so far, though it still hasn't stopped the seizures.
I didn't see any videos of yours. Have you posted them yet?
kubala98 10 months ago
@kubala98 I posted a video and had my friend (who is also a new mother) watch it and she advised that i delete it and do another one because i was changing his diaper while he was having the spasms and every now and then you could catch glimpses of the male anatomy. She said some might accuse me of child porn so i deleted it. I'm going to try to upload another one i just took of him, I would love it if you could watch it and comment.
emilytingey1024 10 months ago
Have you found the infantile spasms board? It won't let me post a link but google it and sign up. It's great and very helpful.
kubala98 10 months ago
yours is as bad is my sons.. How long did it take for u to find out its infantile spasms
nicolettemcr1 2 years ago
It took a while for the Pedi to believe me that something was going on, that's why I kept video taping. I think it was a total of about 3 weeks before he was diagnosed and another week before treatment started to work.
kubala98 2 years ago