I just watched your video and I researched Sandifier's Syndrome. This was the first I've heard of it. I dont think Nick had it based on the descriptions I read and videos I looked at. The good news is whatever he had is gone and he will be two in a few days. Your video looks very much like what Nick would do and he had infantile spasms.
My daughter has been having a lot of the same movements. Did anyone mention Sandifer's Syndrome to you as the underlying cause. Did it happen particularly around feeding time? The syndrome is from reflux causing the esophagus to spasm & causing those myoclonic jerks. So far MRI & 1 hour EEG have been negative. I posted her video at " schluntzmd " Please take a look & tell me if it looks like the same thing to you.
Hi my son has done this about three time its like he had ate something sour, after seen this video I will be taking him to the doctor because it did look very similar I hope it's nothing bad it's my 1st kid I'm very nervous
He never had a head shiver just shrugged his head to his shoulder slightly every once in a while. These were the only signs we saw leading up to this video. It got worse for two months. Now he doesn't haven't any tics. The neurologist told us that what he had would go away and that this sometimes happens as kids systems are maturing. He had every test done and that was the worst part. Take heart and know that God loves you and your child. I remember how scared we were. It seems so long ago now.
@athenamilis My daughter who is a twin is doing the same thing. I'm taking her to the doctors in an hour and reading all the posts of Tourettes and everything else is scaring me. I pray to God it's nothing major...thank you for your post.
we are waiting on neurology to call us monday n make an appointment did u notice anything like this just a head shiver at first im worried it can get worse ..
My son just turned 5 months now we've noticed when he would be changed he'd give a head shake like a "shiver" as if he was cold from baby wipes thats the best way to describe it. It would only be his head nothing with arms just a "shiver" shake &he started to do it when we'd hold him or lying on the bed. im really worried we took him to the E.R &they said he seems perfectly fine he responds well.
HI my name is Mariah My daughter was diagnosed with infantile spasm syndrome.. Have you seen a nurologist.? My daughter would have spasms after waking up from naps ... Please contact me if you need more info.. It looks very similar to what my daughter did... when we first went in the dr told me it was colic he was just going to send us home.. Please contact me .. i have a video posted of dennie having spasms.. she is older but please contact me and see a nurologist.. show him this video...
Update: Nick is 15 months old now and has shown no signs of tics for 5 months. The doctors said it would go away and it has for now. He is developing normally at this point and expecting a baby brother in three months. They seemed to increase for him when he started crawling and when we took him on vacation. I feel that the stimulus of new things really added to his TICS; we still wanted to give him all of the experiences. Docs said he wasn't in pain. Thank God he seems past it.
Do you have an update on your little boy. I strongly feel this is what my daughter has. She started doing this 1 week ago and last thursday she has about 20-30 of these episodes. Sometimes they come 1 at a time and other times for 2 minutes straight. Its very scary and the doctor just said they are TICS. The EEG came back normal but they only did it while she was sleeping and wouldnt do one when she was awake
Same here... if she didn't get her sleep during day, or if she was overstimulated it went out of control. I have uploaded a recording of her, but I can't seem to post the link. If you make a search for "non epileptic myoclonus of infancy" you will find it. I am sure your litte boy will be just fine =)
What a beautiful beautiful little boy, and I hope from the buttom of my heart that he is okay. I just want to tell you that my daughter started making strange movements, jerks actually, and we went through EEGx2, and MR as they thought she suffered from Infantile Spasms. For 6 months we went from doctor to doctor, and from hospital to hospital!! At that time she could have more then 100 seizures a day!! And suddently it just stopped!
Thank you for commenting and for your best wishes. I am happy to hear your daughter has stopped having the episodes. Nick still has them off and on in clusters. Sometimes weeks with none and then a week with many. We have noticed they seem to increase when he is overstimulated or tired. I hope with all my heart that they just go away as the doctors said would happen. He is now 4 months older than the video and just as just, maybe cuter.
I just watched your video and I researched Sandifier's Syndrome. This was the first I've heard of it. I dont think Nick had it based on the descriptions I read and videos I looked at. The good news is whatever he had is gone and he will be two in a few days. Your video looks very much like what Nick would do and he had infantile spasms.
athenamilis 6 months ago
My daughter has been having a lot of the same movements. Did anyone mention Sandifer's Syndrome to you as the underlying cause. Did it happen particularly around feeding time? The syndrome is from reflux causing the esophagus to spasm & causing those myoclonic jerks. So far MRI & 1 hour EEG have been negative. I posted her video at " schluntzmd " Please take a look & tell me if it looks like the same thing to you.
schluntzmd 6 months ago
Hi my son has done this about three time its like he had ate something sour, after seen this video I will be taking him to the doctor because it did look very similar I hope it's nothing bad it's my 1st kid I'm very nervous
iVeronica100 8 months ago
He never had a head shiver just shrugged his head to his shoulder slightly every once in a while. These were the only signs we saw leading up to this video. It got worse for two months. Now he doesn't haven't any tics. The neurologist told us that what he had would go away and that this sometimes happens as kids systems are maturing. He had every test done and that was the worst part. Take heart and know that God loves you and your child. I remember how scared we were. It seems so long ago now.
athenamilis 1 year ago
@athenamilis My daughter who is a twin is doing the same thing. I'm taking her to the doctors in an hour and reading all the posts of Tourettes and everything else is scaring me. I pray to God it's nothing major...thank you for your post.
sungkim808 1 year ago
we are waiting on neurology to call us monday n make an appointment did u notice anything like this just a head shiver at first im worried it can get worse ..
brazypinoi25 1 year ago
My son just turned 5 months now we've noticed when he would be changed he'd give a head shake like a "shiver" as if he was cold from baby wipes thats the best way to describe it. It would only be his head nothing with arms just a "shiver" shake &he started to do it when we'd hold him or lying on the bed. im really worried we took him to the E.R &they said he seems perfectly fine he responds well.
brazypinoi25 1 year ago
HI my name is Mariah My daughter was diagnosed with infantile spasm syndrome.. Have you seen a nurologist.? My daughter would have spasms after waking up from naps ... Please contact me if you need more info.. It looks very similar to what my daughter did... when we first went in the dr told me it was colic he was just going to send us home.. Please contact me .. i have a video posted of dennie having spasms.. she is older but please contact me and see a nurologist.. show him this video...
mariahemmett 1 year ago
Thanks for the update! Hoping this will also go away soon!
ramirezfamily712 1 year ago
Update: Nick is 15 months old now and has shown no signs of tics for 5 months. The doctors said it would go away and it has for now. He is developing normally at this point and expecting a baby brother in three months. They seemed to increase for him when he started crawling and when we took him on vacation. I feel that the stimulus of new things really added to his TICS; we still wanted to give him all of the experiences. Docs said he wasn't in pain. Thank God he seems past it.
athenamilis 1 year ago
Do you have an update on your little boy. I strongly feel this is what my daughter has. She started doing this 1 week ago and last thursday she has about 20-30 of these episodes. Sometimes they come 1 at a time and other times for 2 minutes straight. Its very scary and the doctor just said they are TICS. The EEG came back normal but they only did it while she was sleeping and wouldnt do one when she was awake
ramirezfamily712 1 year ago
Same here... if she didn't get her sleep during day, or if she was overstimulated it went out of control. I have uploaded a recording of her, but I can't seem to post the link. If you make a search for "non epileptic myoclonus of infancy" you will find it. I am sure your litte boy will be just fine =)
Quvang79 1 year ago
Maya was diagnosed with "non epileptic myoclonus of infancy" and we thank God for hearing our prayers. Now I will pray for your little angel!
Quvang79 1 year ago
What a beautiful beautiful little boy, and I hope from the buttom of my heart that he is okay. I just want to tell you that my daughter started making strange movements, jerks actually, and we went through EEGx2, and MR as they thought she suffered from Infantile Spasms. For 6 months we went from doctor to doctor, and from hospital to hospital!! At that time she could have more then 100 seizures a day!! And suddently it just stopped!
Quvang79 1 year ago
@Quvang79
Thank you for commenting and for your best wishes. I am happy to hear your daughter has stopped having the episodes. Nick still has them off and on in clusters. Sometimes weeks with none and then a week with many. We have noticed they seem to increase when he is overstimulated or tired. I hope with all my heart that they just go away as the doctors said would happen. He is now 4 months older than the video and just as just, maybe cuter.
athenamilis 1 year ago