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My son has tuberous sclerosis and has been having infantile spasms for about a month now. He is taking vigabatrin and we are waiting for the miracle drug to kick in
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My son has tuberous sclerosis and has been having infantile spasms for about a month now. He is taking vigabatrin and we are waiting for the miracle drug to kick in
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My son has tuberous sclerosis and has been having infantile spasms for about a month now. He is taking vigabatrin and we are waiting for the miracle drug to kick in
These definatly look like mild infantile spasms to me Our little one had
them but more violent now thankfully under control using Vigabatrin.Hope
you get control soon best of luck.
Thank you for posting this video, I am sure it is both education and
helpful to many.. I really hope your son is doing better now. Wishing you
all the very best, Chelle x
my daughter had similar siezures when she was 4 monthes…i hope ur baby is
doing better
omg i would be scared if i had a baby and he/she was doing that….thats so
scary too
does this affect his development in the future??… My nephew just did a
1dayEEG and they detected he was having seizures but said they couldn’t
know what the problem was or anything for a while, and his seizures kind of
look like that, and it usually happens when he’s worked up or upset, his
arm freezes and face distorts.
poor thing, I’m so sorry thst he has to go through that, and at that early
age.
Hi….My son is 7 months old, and also has spasms like this…..but he’s
never been diagnosed with anything. How did you get your Dr.’s to listen to
you? I just posted a video of my son on here….hoping that someone will
have some answers. Thank you for posting yours. I’m scared out of my mind
right now, as I watch all these videos. Rachel
Hi, my son has this, and he has been on Vigabatrin for 2 days. Already, the
spasms have subsided, but he is very sleepy. He is only taking 250 ml for
the first week, and is very sleepy. I was wondering what your daughter was
on.
There is an acupressure point that is very famous for stopping convulsions.
It is called Shui gou, Ren Zhong, Du 26, or GV 26. It is located on the
philtrum, 1/3 the distance from the nose and the top of the lip. Give it a
try if you wish, but make sure you talk to a qualified acupuncturist that
specializes in pediatrics to locate the point correctly and apply the
correct pressure so that you do not injure yourself or your child.
Praying for your sweet little boy.
@mimi0674 the spasms occur quickly (a myoclonic jerk) at 0:14, 0:36, 0:52…
my daughter is 11 weeks and she does this same thing but the pediatrician
said she’s prolly fine but im still worried what did you do to get them to
diagnose your baby?
Hi, my son also has tuberous sclerosis and has epileptic seizures and also
infantile spasms. I hope your little ones doing ok at the moment X
Your video brings back hard memories of when our daughter was having IS.
I’ll pray that the Vigabatrin works. It did for our daughter, but it took a
while and we really had to use very high doses. Our daughter doesn’t have
TS, and we never could figure out what caused hers.
hello my son is 4yrs old and has been having spasms since he was also
6months old. he does see a neurologist and has been on medication for years
now. should i tell these to the doctor?? it is so hard to see my son go
through this.
It seems as if he knows whats going on and is concious, it seems to be
scaring him and causing some discomfort. While his body does its spasms.
I’m just taking a guess.
poor baby!!!! in nursing school learning about this aww im so sorry
Hi…I realize this was posted a long time ago but I was wondering how your
son is doing. My daughter had infantile spasms and Vigabatrin was a miracle
drug for her. She has TSC and is developing great! We go to a hospital in
Boston and it is wonderful…I am thankful for our neurologist!!
This is heart breaking. My son has severe seizure disorders.I am in the
process of making numerous vidoes of him seizing. He is being evaluated for
hemispherectomy surgery. please visit my profile.
my son also so used the great med it worked for him in hours thank god my
doc said 1 1/2 pill at first then she carefully decreased it by looking at
his EEG’s keep up the great work !! im part of thr tsc family too and we
are strong god bless
Hmm… These are similar to the seizures caused by MoyaMoya… interesting.
Good luck with medication for the little one,
*Goes off to do research.*
he’s gorgeous.
I had west’s syndrome when I was 5 months old but recently tested as 129 in
an official IQ test. Dont give up hope about your child’s future.
Bless his heart. So scary to watch and so sad for baby. My daughter has a
genetic condition and had a grand mal seizure one time. It was such an
awful thing and I can’t imagine having to deal with seizures on a regular
basis. Your little boy is ADORABLE. Hoping the meds work for him.
Thank you for posting the video. My son, Luca, died from complications of
Tuberous Sclerosis (rhabdomyoma). I have a newborn daughter, and am glad to
actually see what IS look like so I can be aware. I hope your precious boy
responds to the medicine soon.
Don’t give up, poor baby and mama
I will pray for your son.
I hope he get better, This book might be useful, you can find it on online
book stores. Infantile Spasms: Diagnosis, Management and Prognosis
They are very common in Down’s babies
I wish you all the best and you are in my prayers. May the Lord protect and
save your shinnning star, your son. The struggle is going to be very
frustrating but please never lose hope for many of are us standing by and
rooting for you. Good luck. Gerrie
I am not familiar with TS, but my daughter had spasms just like this as a
baby. She is almost 3 and has outgrown them (Thank God and knock wood). It
is only tonight that I’ve ever seen other examples. I happened to see a
Discovery Medical TV show and grabbed my husband – look that’s exactly what
Becca had. They called it infantile spasm. So now I’ve been surfing the web
looking it up and seeing other kids do exactly what she did. Becca also has
Down syndrome. Best wishes to you.
no he is not crying because he wants to be picked up he has tsc and is
having a cluster of infantile spasms if you watched all of this video. he
has seizures nearly everyday and I spend all day while my older kids are
off at school holding him ,loving him and helping him along developmentally