I am so sorry to hear about your daughters late diagnosis, we have had late diagnosis as well in another medical area leading to life-altering events. Have you considered changing your Caption on this video so as not to mis-lead parents who are looking at these for comparison but might not see the Comments?
@cgfrap I changed it. We have a lot of these videos, so it's easy for some of these very old ones to still have out of date info in the description. This one is now corrected.
My son also has had 2 similar episodes. We tried an EEG and he woke up midway, so we're trying a sedated one and MRI asap. The first episode was shaky like this video, the one today was more of a stiff position without shuttering and the eye movement. Today's was a little longer then the first. Maybe a minute. I'm not sure when it started, I caught it after it began because he was facing the tv. My neurologist suggests possible breath holding causing the episode also. He has reflux, we just can
@Diva2be7 Some of your message got cut off, but I got the hang of it. I just wanted to reply and tell you that now, more than a year later, we've found out that Zoe does have Infantile Spasms - a rare epileptic disorder. It didn't show up on EEGs, MRIs, or anything for 15 months, so it went untreated. Based on this, my advice is just that, if Neuros strongly suspect epilepsy, try a medicine or two just to see if it helps. The risk is low, and if we'd done that, it could have saved her mind.
Hi my son is doing somthing similar to this often during eating. We have had a normal EEG but I still feel as if somthing is not right - comming across your video is helpful and I was wonder how she is after the episode? My son falls into a deep unresponsive sleep (can't wake him) for 20-30 min then wants to finish eating & is completely normal. He has had a lot of spit up issues - more like projectile vomiting- hrs after feedings. Thanks
@blumoonqueen55 Did anyone ever get back with you on your question. My 9 month old has similar spasms but also has this 20-30 unresponsive sleep afterwards. Something I am not finding many mention with Sandifer.
@sisenhoff1 Sorry for the wait on a reply. Our daughter used to do this exact same thing after episodes - deep sleep for 30 mins. We later found out it is indeed a characteristic symptom of seizures - they're draining and often children go to sleep after. A year after this video, our daughter was finally diagnosed with Infantile Spasms (Sandifers was a wrong guess). My advice is simply to be more diligent than we were - test and retest on EEGs. Maybe even try a med just to see if it helps.
@blumoonqueen55 Sorry for the wait on a reply. Our daughter used to do this exact same thing after episodes - deep sleep for 30 mins. We later found out it is indeed a characteristic symptom of seizures - they're draining and often children go to sleep after. A year after this video, our daughter was finally diagnosed with Infantile Spasms (Sandifers was a wrong guess). My advice is simply to be more diligent than we were - test and retest on EEGs. Maybe even try a med to see if it helps.
Thank you SO much for posting this! My almost 6 month old has been having similar episodes, and does them only after eating or while sleeping. We are taking him to a neurologist on Monday.
My son also did this! He was diagnosed with reflux when he was a month old & prescribed zantac. The doctors always told me this was just a nervous disorder, and nothing needed to be done about it. I'm really surprised that they didn't associate it with the GERD! He's almost 3 now & very very rarely shakes like this anymore.
No, they definitely didn't associate it with reflux, and she was in several hospitals and seen by several Neurologists. VERY frustrating, because we were told to give her two very strong anti-seizure medicines for a month before they gave up chasing epilepsy as the cause, and it took us 'til she was almost 5 months old to have someone even suggest GERD as the cause. Zoe's almost 1 year old now and still does this sometimes. She's on Prevacid, but for episodes, Gaviscon is the new hero.
It was something our Pediatrician told us to try. If they can stop, then it's probably not a seizure. Of course, this didn't prove to be a very good test in hindsight, because she couldn't really stop, but these episodes have since been proven not to be seizures.
Norrah was already diagnosed with reflux at 1.5 months old and is on prevacid and zantac. She still pukes often, sometimes many full meals a day, and she is doing these wierd seizure looking things. If it is Sandifer's I guess that means the meds are not working. Is your baby being treated?
Yes, Zoe is being treated and was definitely positive for GERD on the Upper GI test. We've also had minimal success with the Prevacid and Zantac she's on (strange coincidence... I guess those are the GERD drugs of the day.)
Again, I just showed my wife your videos and she agrees - it's an open and shut case for Sandifer's Syndrome. I'm actually shocked your Neurologist hasn't made that call yet.
I am so glad to have found your videos but so sad that our babes are going through this. The Ped. Neurologist hasn't seen Norrah yet. He is just ordering tests and reading the EEGs/MRIS through the pediatrician at this point. My first visit with him is Jan 16th after Norrah's MRI. I hate for her to have to have an MRI and sedation if this is clearly Sandifer's but she is also dev. delayed and I guess they are trying to rule out something else.
Hi. I am a mother of a baby girl who does similar movements to your dear daughter. You can see our videos on our user channel. I would be happy to have any advice or thoughts from you (someone who has already walked through all the needless testing) as we are in the beginning stages of the HUNT TO FIND A DIAGNOSIS. Seizures was the first thing suggested but now the Docs are not sure with 2 normal EEGS. Has your babe been treated? Is she responding to any meds?
Anyway, we did nearly become Sandifer's experts on the way to where we are (STILL without a diagnosis.) If your baby is positive for reflux (check for it - get the upper GI test even if there aren't outward signs, because it could be silent reflux) then I'd say it's 100% Sandifer's Syndrome and your baby will outgrow it as all Sandifer's babies do.
I am so sorry to hear about your daughters late diagnosis, we have had late diagnosis as well in another medical area leading to life-altering events. Have you considered changing your Caption on this video so as not to mis-lead parents who are looking at these for comparison but might not see the Comments?
cgfrap 2 weeks ago
@cgfrap I changed it. We have a lot of these videos, so it's easy for some of these very old ones to still have out of date info in the description. This one is now corrected.
dirtyelectronic 2 weeks ago
My son also has had 2 similar episodes. We tried an EEG and he woke up midway, so we're trying a sedated one and MRI asap. The first episode was shaky like this video, the one today was more of a stiff position without shuttering and the eye movement. Today's was a little longer then the first. Maybe a minute. I'm not sure when it started, I caught it after it began because he was facing the tv. My neurologist suggests possible breath holding causing the episode also. He has reflux, we just can
Diva2be7 1 year ago
@Diva2be7 Some of your message got cut off, but I got the hang of it. I just wanted to reply and tell you that now, more than a year later, we've found out that Zoe does have Infantile Spasms - a rare epileptic disorder. It didn't show up on EEGs, MRIs, or anything for 15 months, so it went untreated. Based on this, my advice is just that, if Neuros strongly suspect epilepsy, try a medicine or two just to see if it helps. The risk is low, and if we'd done that, it could have saved her mind.
dirtyelectronic 1 year ago
Hi my son is doing somthing similar to this often during eating. We have had a normal EEG but I still feel as if somthing is not right - comming across your video is helpful and I was wonder how she is after the episode? My son falls into a deep unresponsive sleep (can't wake him) for 20-30 min then wants to finish eating & is completely normal. He has had a lot of spit up issues - more like projectile vomiting- hrs after feedings. Thanks
blumoonqueen55 1 year ago
@blumoonqueen55 Did anyone ever get back with you on your question. My 9 month old has similar spasms but also has this 20-30 unresponsive sleep afterwards. Something I am not finding many mention with Sandifer.
sisenhoff1 1 year ago
@sisenhoff1 Sorry for the wait on a reply. Our daughter used to do this exact same thing after episodes - deep sleep for 30 mins. We later found out it is indeed a characteristic symptom of seizures - they're draining and often children go to sleep after. A year after this video, our daughter was finally diagnosed with Infantile Spasms (Sandifers was a wrong guess). My advice is simply to be more diligent than we were - test and retest on EEGs. Maybe even try a med just to see if it helps.
dirtyelectronic 1 year ago
@blumoonqueen55 Sorry for the wait on a reply. Our daughter used to do this exact same thing after episodes - deep sleep for 30 mins. We later found out it is indeed a characteristic symptom of seizures - they're draining and often children go to sleep after. A year after this video, our daughter was finally diagnosed with Infantile Spasms (Sandifers was a wrong guess). My advice is simply to be more diligent than we were - test and retest on EEGs. Maybe even try a med to see if it helps.
dirtyelectronic 1 year ago
Thank you SO much for posting this! My almost 6 month old has been having similar episodes, and does them only after eating or while sleeping. We are taking him to a neurologist on Monday.
alilbabyphat18 2 years ago
My son also did this! He was diagnosed with reflux when he was a month old & prescribed zantac. The doctors always told me this was just a nervous disorder, and nothing needed to be done about it. I'm really surprised that they didn't associate it with the GERD! He's almost 3 now & very very rarely shakes like this anymore.
starznburls 2 years ago
No, they definitely didn't associate it with reflux, and she was in several hospitals and seen by several Neurologists. VERY frustrating, because we were told to give her two very strong anti-seizure medicines for a month before they gave up chasing epilepsy as the cause, and it took us 'til she was almost 5 months old to have someone even suggest GERD as the cause. Zoe's almost 1 year old now and still does this sometimes. She's on Prevacid, but for episodes, Gaviscon is the new hero.
dirtyelectronic 2 years ago
Why were you asking her to stop?
pixie1310 2 years ago
It was something our Pediatrician told us to try. If they can stop, then it's probably not a seizure. Of course, this didn't prove to be a very good test in hindsight, because she couldn't really stop, but these episodes have since been proven not to be seizures.
dirtyelectronic 2 years ago
Norrah was already diagnosed with reflux at 1.5 months old and is on prevacid and zantac. She still pukes often, sometimes many full meals a day, and she is doing these wierd seizure looking things. If it is Sandifer's I guess that means the meds are not working. Is your baby being treated?
KenandLuPlus2 3 years ago
Yes, Zoe is being treated and was definitely positive for GERD on the Upper GI test. We've also had minimal success with the Prevacid and Zantac she's on (strange coincidence... I guess those are the GERD drugs of the day.)
Again, I just showed my wife your videos and she agrees - it's an open and shut case for Sandifer's Syndrome. I'm actually shocked your Neurologist hasn't made that call yet.
dirtyelectronic 3 years ago
I am so glad to have found your videos but so sad that our babes are going through this. The Ped. Neurologist hasn't seen Norrah yet. He is just ordering tests and reading the EEGs/MRIS through the pediatrician at this point. My first visit with him is Jan 16th after Norrah's MRI. I hate for her to have to have an MRI and sedation if this is clearly Sandifer's but she is also dev. delayed and I guess they are trying to rule out something else.
KenandLuPlus2 3 years ago
Hi. I am a mother of a baby girl who does similar movements to your dear daughter. You can see our videos on our user channel. I would be happy to have any advice or thoughts from you (someone who has already walked through all the needless testing) as we are in the beginning stages of the HUNT TO FIND A DIAGNOSIS. Seizures was the first thing suggested but now the Docs are not sure with 2 normal EEGS. Has your babe been treated? Is she responding to any meds?
KenandLuPlus2 3 years ago
Anyway, we did nearly become Sandifer's experts on the way to where we are (STILL without a diagnosis.) If your baby is positive for reflux (check for it - get the upper GI test even if there aren't outward signs, because it could be silent reflux) then I'd say it's 100% Sandifer's Syndrome and your baby will outgrow it as all Sandifer's babies do.
dirtyelectronic 3 years ago