West syndrome or Salaam or jackknife attacks: a flexor spasm with rapid bending of the head and torso forward and simultaneous raising and bending of the arms while partially drawing the hands together in front of the chest and/or flailing. If one imagined this act in slow motion, it would appear similar to the oriental ceremonial greeting (Salaam), from which this type of attack derives its name.
This was when he was on the highest dose of Topamax. We had been off and on to hospital for days and the neuro told us that these myoclonic episodes are not deadly. We video taped this episode for educational purposes. It is actually used in medical schools to educate doctors in training. After spending a week in an epilepsy center we discovered gluten foods are what caused this seizures in my child.
kids are supposed to go to hospital if having seizures not sitting there video taping !! and also if a seizure lasts more than 5 minutes need a special epileptic med to stop it SHOULD BE AT HOSPITAL FOLLOWING SEIZURES NOT MAKING VIDEOS SITTING THERE CALMLY !!! THEY ARE LIFE THREATENING AND IF EVEN CLOSE TO 5 MIN CAN DEF. BE DEADLY !!!!!
my child was also taken off topomax after they get bigger no longer works or is a stong enough med ..so now what medication is he on ?
kids are supposed to go to hospital if having seizures not sitting there video taping !! and also if a seizure lasts more than 5 minutes need a special epileptic med to stop it SHOULD BE AT HOSPITAL FOLLOWING SEIZURES NOT MAKING VIDEOS SITTING THERE CALMLY !!! THEY ARE LIFE THREATENING AND IF EVEN CLOSE TO 5 MIN CAN DEF. BE DEADLY !!!!!
Melissa, How is your little brother now? We had his under control being gluten free but about 5 weeks ago we started seeing random head drops again. Going for an EEG soon.
My daughter does the same thing... only she wiggles more with it, and brings her arms up to her mouth and usually cries out. I want to take her to a doctor, because with all the researching I've been doing, I think she's having seizures :( Her grandmother has epilepsy... I hope your son is still doing well.
I hate these seizures! So glad to hear Chase is doing better. We are praying that our daughters will finally come under control as well. Blessings, Cherie
You seems to have lots of caring input to your showing of the video. I would just like to add, I thanks you have the most beautiful baby. I had full seizures starting at a year old. Never really bothered me other than having to stay in bed the following day, after the fits which were nocturnal. I had a blinding headache after, but that all. Had my first daytime fit whilst awake about 18 years ago, and have not worked since, because I can't use machines or drive
That looks like my son's seizures when he was an infant. They were called infantile spasms and did some damage. . Medication didn't help, but surgery did. Once they get beyond infant stage, these seizures can turn into other kinds of seizures, which can come and go. The brain is tricky; you think they're getting better but sometimes they aren't. You just can't see it. I hope you are getting good medical help for them. We went to UCLA and Barrow Neurological Institute in Phoenix and both helped.
Does your son get tired after the seizure or regress after the seizure? My 1 year old just keeps on doing what she was doing before and she isn't regressing....infantile spasms I guess involve clustering seizures and they cause brain damage so that is why we have to give her an EEG right away. But it is weird how these seizures look exactly the same as she has.
My son Helmer, 2 1/2 years old, is having seizures identical to this. How old is Chase now, and how is he developing?
Helmer was diagnosed with infantile spasms almost to years ago. 9 different medications and ketogenic diet have done nothing to help him, and he is like a 7-8 month old baby when it comes to motor skills and mental development.
My son is 26 months now and we went through the same thing with meds. They wanted to do the ketogenic diet but he is allergic to diary so was not a good option for us. We discovered that glutens(wheat) were causing his seizures. We are now medicine free and gluten free and now only see occasional absence seizures. But since then we have recieved the autism diagnosis. He has no communication nor words. Motor wise he is up to age but mental has a lot of room for improvement. Good luck!
Glad to hear that his seizures disappeared:-) We have now had Helmer tested for celiac disease, but all tests are not ready yet. How long did it take for Chase to get rid of his seizures after you started the diet?
We noticed a difference in about 3-4 weeks. Within the first few days they were not as long of episodes but still having them randomly. After 4 weeks we went almost 7 weeks without one then he got a hold of one cherrieo at church and had a cluster for 2 days then we have not seen them since. That we can tell.
Good luck to you and Helmer! My thoughts are with you all!
My cousin has celiac disease , which means he can't digest WHEAT and some other kind of food for the rest of his life , if he does he could go blind or lose his hair or even die.
my daughter is the same, did he start with febrile seizures?? then it turned into non febrile seizures then to myoclonic?? thats what happened to my girl and they have tested her with alot, even genetic testing. her motor skills are delayed and especially her speech and language. they put her on sodium valproate and clobozam which have helped alot!! have you tried those?? good luck!! and i hope helmer is better!!
um my dad hade some seziures and uses topamax the only thing we had to do was up the dosage because he had a seziure when he was taking and sine then he's been ok
Hi. Please try excluding yeast, glutamate (made from yeast) vinegar (made with yeast) mushrooms, smoked things (contains much mold spores) and wheat (shares building blocks with yeast). If the body is sensitive to yeast (possible from a candida overgrowth) it will attack these foods and at the same time hit some parts of our body with the antibodies. Some seizures can be caused by food allergies and a yeast is the most likely. I sometimes get spasms as little as 1 hour after eating these things.
Hi, My son went into hospital today having exactly the same type of spasm movement. He's staying in for observation for a couple of nights. Looking back he's may have been having the symtoms for about 3 - 4 weeks. but has stopped smiling, can't sit up or crawl, he cry's during a cluster and then sleeps for several hours. usually happen mid afternoon. He's 10 months old, how old is chase in the video? I've seen the other video you have posted as well and he seems a bit older.
He is about 15 months old in this video. But they started at 10 months old. Right now we are medicine free and have been seizure free for about a month. All the meds we tried made him worse. I will keep your family in our prayers.
Our son, Charlie, has had the eeg today and they doctors have confirmed the IS. Now they are looking for the cause. started steroids tonight and booked for MRI and Lumbar punch asap, possibly tomorrow. It's really distressing not knowing....
hay I know what u are going through my son is 4 yrs old and he has the same problem it is painful watching this video i go through it every day he been having them since he was 6mths old. how did u get them to stop my son been on meds for yrs already
Thank you to all that have commented on Chase. He is getting so much better right now. After almost 3 months on Topamax and his seizures getting worse we decided to take him off. To our surprise he has been seizure free for a little over 6 weeks. He is finally starting to respond to us and started making verbal sounds like "mama" and "dada". We still have sensory issues and possibly on the spectrum but those are being treated with early intervention.
Marijuana will help this problem, He`s way too young right now, unless you feed it to him, but if this problem persist over the next 10 years, Help Him!
The head drops don't always cluster. This morning he had two small ones during his occupational therapy. Must people would never even know that was a seizure. I truly think he started having them around 7 months but we did not notice them until we mentioned him shaking his head yes and his eyes rolling up. That is when we got an EEG and it showed 15 myoclonic jerks in under 5 minutes. Makes me wonder if he still has them while sleeping. Good luck with your daughter!
You should get him tested for Celiac commonly associated with Myoclonic seizures. I have them as well. I would get thousands a day. They are a symptom of an autoimmune disorder. Mine are controled now by going on a gluten free diet, completely med free. I only had 2 today, a small flare up, but have gone a few months without any thanks to a strict wheat free diet. Worth looking into, it could give needed relief. Search Celiac & myclonic, find a celiac specialist in your area & get him tested.
My daughter had seizures from 2-5 months of age and hasn't had any for 3 months now, but has started doing a head drop thing maybe once a day. It doesn't cluster like this, though. Do myoclonic and head drop seizures always cluster? Thank you for posting. It helps those of us still searching for answers.
He had a 24 hour EEG during one of these episodes and they said it was both head drop and myoclonic seizures. Do you have a child with similar seizures?
I saw in your other video that that he's already been diagnosed with myoclonic and tonic. Has he had an eeg since this kind started (on this video). These look a lot like early/mild infantile spasms. They could just be "head drop" seizures, but with the arm, they look more like IS
West syndrome or Salaam or jackknife attacks: a flexor spasm with rapid bending of the head and torso forward and simultaneous raising and bending of the arms while partially drawing the hands together in front of the chest and/or flailing. If one imagined this act in slow motion, it would appear similar to the oriental ceremonial greeting (Salaam), from which this type of attack derives its name.
nader4u2003 2 weeks ago
Aww he's so cute. Hope he is ok and these stop
Clearwater1999 4 weeks ago
wat?
nomeo2 1 month ago
awwe hes so cute!
xokizza 2 months ago
This was when he was on the highest dose of Topamax. We had been off and on to hospital for days and the neuro told us that these myoclonic episodes are not deadly. We video taped this episode for educational purposes. It is actually used in medical schools to educate doctors in training. After spending a week in an epilepsy center we discovered gluten foods are what caused this seizures in my child.
eatapeach10 6 months ago
kids are supposed to go to hospital if having seizures not sitting there video taping !! and also if a seizure lasts more than 5 minutes need a special epileptic med to stop it SHOULD BE AT HOSPITAL FOLLOWING SEIZURES NOT MAKING VIDEOS SITTING THERE CALMLY !!! THEY ARE LIFE THREATENING AND IF EVEN CLOSE TO 5 MIN CAN DEF. BE DEADLY !!!!!
my child was also taken off topomax after they get bigger no longer works or is a stong enough med ..so now what medication is he on ?
MyFrogger420 6 months ago
@MyFrogger420 UM HELLO SOME JUST HAPPEN OUT OF NO WERE MY FRENIDS COUSIN HAVE SURISERS
danyel89634lovedrew6 1 month ago
kids are supposed to go to hospital if having seizures not sitting there video taping !! and also if a seizure lasts more than 5 minutes need a special epileptic med to stop it SHOULD BE AT HOSPITAL FOLLOWING SEIZURES NOT MAKING VIDEOS SITTING THERE CALMLY !!! THEY ARE LIFE THREATENING AND IF EVEN CLOSE TO 5 MIN CAN DEF. BE DEADLY !!!!!
MyFrogger420 6 months ago
why is he doing that?
MusiSaabV2 6 months ago
Melissa, How is your little brother now? We had his under control being gluten free but about 5 weeks ago we started seeing random head drops again. Going for an EEG soon.
mdoss10 6 months ago
i have a mini heart attack every time his head drops! chase is almost identical to my little brother when he was that age. such a strong boy!
MelissaVarga 6 months ago
breaks my heart... i can't even imagine what it's like to see this!! what good parents!
ekm14344 7 months ago
My daughter does the same thing... only she wiggles more with it, and brings her arms up to her mouth and usually cries out. I want to take her to a doctor, because with all the researching I've been doing, I think she's having seizures :( Her grandmother has epilepsy... I hope your son is still doing well.
xxMissApolaustic 10 months ago
Awww poor Chase im reallyglad he's okay
inarss777 11 months ago 3
I hate these seizures! So glad to hear Chase is doing better. We are praying that our daughters will finally come under control as well. Blessings, Cherie
cbsbtjzack 1 year ago
poor child,
scenemonster101 1 year ago
Hi msdos10,
You seems to have lots of caring input to your showing of the video. I would just like to add, I thanks you have the most beautiful baby. I had full seizures starting at a year old. Never really bothered me other than having to stay in bed the following day, after the fits which were nocturnal. I had a blinding headache after, but that all. Had my first daytime fit whilst awake about 18 years ago, and have not worked since, because I can't use machines or drive
Take care mrbluenun
mrbluenun 1 year ago
This comment has received too many negative votes show
lol this is funny
WTFvirus1 1 year ago
@WTFvirus1 Are you crazy? What a sensless thing to say...
TheGwynnSmith 1 year ago
Despite the seizure, he seems like he's responding well to everything! Especially when he looked at what my guess is the television?
SorafiLynn 1 year ago
Oh my god,poor kid! he drops his head alot, is that they way you can tell?
GeorgeRulesVideos 1 year ago
i hope hes ok!!!!
stupidchicken112 1 year ago
call the priest
TheShoeSex 1 year ago
That looks like my son's seizures when he was an infant. They were called infantile spasms and did some damage. . Medication didn't help, but surgery did. Once they get beyond infant stage, these seizures can turn into other kinds of seizures, which can come and go. The brain is tricky; you think they're getting better but sometimes they aren't. You just can't see it. I hope you are getting good medical help for them. We went to UCLA and Barrow Neurological Institute in Phoenix and both helped.
supercrafty 1 year ago
Seizures and other neurological disorders are usually caused by the heavy metals mercury and aluminium that are contained in vaccinations....
Main stream medicine will ALWAYS deny this link!
If you would to improve the health of your child, please send me a PM.
HealthRanger7 1 year ago
Maybe you should have that looked at.
goofygal19 1 year ago
it makes me wanna cry knowin tht he has seizures like this...i pray tht he will get better
mzniki68 1 year ago
it maybe so hard for a baby like him..huhuhu..
baded28 1 year ago
Does he have epilepsie?
marjan12342 1 year ago
0:24 omg fucking take it to the hospital.
BrotherTree1 1 year ago
Annd sooo, what do the docs say? he looks like he hates those things!
SkaterBoyBrey 2 years ago
I'm so sorry, I hope he gets better
kevinpangman123 2 years ago
Does your son get tired after the seizure or regress after the seizure? My 1 year old just keeps on doing what she was doing before and she isn't regressing....infantile spasms I guess involve clustering seizures and they cause brain damage so that is why we have to give her an EEG right away. But it is weird how these seizures look exactly the same as she has.
amysarahh 2 years ago
Hi
My son Helmer, 2 1/2 years old, is having seizures identical to this. How old is Chase now, and how is he developing?
Helmer was diagnosed with infantile spasms almost to years ago. 9 different medications and ketogenic diet have done nothing to help him, and he is like a 7-8 month old baby when it comes to motor skills and mental development.
Regards,
Hilde from Norway
HildeTrondheim 2 years ago 3
My son is 26 months now and we went through the same thing with meds. They wanted to do the ketogenic diet but he is allergic to diary so was not a good option for us. We discovered that glutens(wheat) were causing his seizures. We are now medicine free and gluten free and now only see occasional absence seizures. But since then we have recieved the autism diagnosis. He has no communication nor words. Motor wise he is up to age but mental has a lot of room for improvement. Good luck!
mdoss10 2 years ago
Hello again
Thank you for your quick answer.
Glad to hear that his seizures disappeared:-) We have now had Helmer tested for celiac disease, but all tests are not ready yet. How long did it take for Chase to get rid of his seizures after you started the diet?
Good luck to you too:-) Hilde
HildeTrondheim 2 years ago
We noticed a difference in about 3-4 weeks. Within the first few days they were not as long of episodes but still having them randomly. After 4 weeks we went almost 7 weeks without one then he got a hold of one cherrieo at church and had a cluster for 2 days then we have not seen them since. That we can tell.
Good luck to you and Helmer! My thoughts are with you all!
mdoss10 2 years ago
My cousin has celiac disease , which means he can't digest WHEAT and some other kind of food for the rest of his life , if he does he could go blind or lose his hair or even die.
Do you think this could be affecting chase?
GamingHell 2 years ago
my daughter is the same, did he start with febrile seizures?? then it turned into non febrile seizures then to myoclonic?? thats what happened to my girl and they have tested her with alot, even genetic testing. her motor skills are delayed and especially her speech and language. they put her on sodium valproate and clobozam which have helped alot!! have you tried those?? good luck!! and i hope helmer is better!!
nicoleywoleypoley 2 years ago
Poor little sweetie. My daughter Emma just had a myoclonic seizure a few hours ago, here at home. We had to give her distat.
Did Chase ever try Zonegran? That is what take as a preventative. Emma has only had 3 seizures in 4 years so it works well for her.
Everyone mentions Topamax. Might have to check it out if we have any more break through seizures
Momoftwinsplus1 2 years ago
um my dad hade some seziures and uses topamax the only thing we had to do was up the dosage because he had a seziure when he was taking and sine then he's been ok
donowid445 2 years ago
@Momoftwinsplus1 Please, not Topamax... causes overheating, severe regression, and a lot of other things.. It is nicknamed Stupidmax...
sgibbons3 1 year ago
It is great how calm you seem to stay in the video. My daughter too used to do these type of seizures and she has IS.
koski141 2 years ago
Hi. Please try excluding yeast, glutamate (made from yeast) vinegar (made with yeast) mushrooms, smoked things (contains much mold spores) and wheat (shares building blocks with yeast). If the body is sensitive to yeast (possible from a candida overgrowth) it will attack these foods and at the same time hit some parts of our body with the antibodies. Some seizures can be caused by food allergies and a yeast is the most likely. I sometimes get spasms as little as 1 hour after eating these things.
angelorenda 2 years ago
Hi, My son went into hospital today having exactly the same type of spasm movement. He's staying in for observation for a couple of nights. Looking back he's may have been having the symtoms for about 3 - 4 weeks. but has stopped smiling, can't sit up or crawl, he cry's during a cluster and then sleeps for several hours. usually happen mid afternoon. He's 10 months old, how old is chase in the video? I've seen the other video you have posted as well and he seems a bit older.
martinallan 2 years ago
He is about 15 months old in this video. But they started at 10 months old. Right now we are medicine free and have been seizure free for about a month. All the meds we tried made him worse. I will keep your family in our prayers.
xxlipgermsxx 2 years ago
Our son, Charlie, has had the eeg today and they doctors have confirmed the IS. Now they are looking for the cause. started steroids tonight and booked for MRI and Lumbar punch asap, possibly tomorrow. It's really distressing not knowing....
martinallan 2 years ago
hay I know what u are going through my son is 4 yrs old and he has the same problem it is painful watching this video i go through it every day he been having them since he was 6mths old. how did u get them to stop my son been on meds for yrs already
Res1nHL 2 years ago
Brain chip - CHECK MY SITE.
bpyjktgiuk 2 years ago
it doesnt seem like he notices it
regular baby slaps and babbles..
bella37076 2 years ago
It looks like he's being shocked or something :( Seems like he isn't getting hurt or anything, though. Hope he grows up to be a happy child :)
FloMoshun 2 years ago
Thank you to all that have commented on Chase. He is getting so much better right now. After almost 3 months on Topamax and his seizures getting worse we decided to take him off. To our surprise he has been seizure free for a little over 6 weeks. He is finally starting to respond to us and started making verbal sounds like "mama" and "dada". We still have sensory issues and possibly on the spectrum but those are being treated with early intervention.
Thanks for all the prayers and concerns!
mdoss10 2 years ago
Marijuana will help this problem, He`s way too young right now, unless you feed it to him, but if this problem persist over the next 10 years, Help Him!
weaping11reaper 2 years ago
Aww it breaks my heart to see a baby going through this. It doesn't hurt him as far as you know does it? He doesn't seem in pain. Gosh so sad. :(
goodbyewaves7 3 years ago
The head drops don't always cluster. This morning he had two small ones during his occupational therapy. Must people would never even know that was a seizure. I truly think he started having them around 7 months but we did not notice them until we mentioned him shaking his head yes and his eyes rolling up. That is when we got an EEG and it showed 15 myoclonic jerks in under 5 minutes. Makes me wonder if he still has them while sleeping. Good luck with your daughter!
mdoss10 3 years ago
You should get him tested for Celiac commonly associated with Myoclonic seizures. I have them as well. I would get thousands a day. They are a symptom of an autoimmune disorder. Mine are controled now by going on a gluten free diet, completely med free. I only had 2 today, a small flare up, but have gone a few months without any thanks to a strict wheat free diet. Worth looking into, it could give needed relief. Search Celiac & myclonic, find a celiac specialist in your area & get him tested.
pamelamadindong 3 years ago
@mdoss10 I just saw this video ... nd i really hope he gets better .. ill be praying for him... i knw tht God works miracles .. =)
PrincessMisch 1 year ago
My daughter had seizures from 2-5 months of age and hasn't had any for 3 months now, but has started doing a head drop thing maybe once a day. It doesn't cluster like this, though. Do myoclonic and head drop seizures always cluster? Thank you for posting. It helps those of us still searching for answers.
megandycom 3 years ago
He had a 24 hour EEG during one of these episodes and they said it was both head drop and myoclonic seizures. Do you have a child with similar seizures?
mdoss10 3 years ago
I saw in your other video that that he's already been diagnosed with myoclonic and tonic. Has he had an eeg since this kind started (on this video). These look a lot like early/mild infantile spasms. They could just be "head drop" seizures, but with the arm, they look more like IS
alisonamsb 3 years ago