We got the pH probe done & she DOES have reflux which correlated with her movements. A small tube was placed down her nose into her lower esophagus for 24 hours to monitor the level of acidity that made its way up into the esophagus. The tube was tethered to a device with buttons to push when she had meals or when she looked like she was in pain or having strange movements. The times I pushed the button definitely correlated with these movements...poor dear! The GI specialist switched her meds.
We finally got in to see the GI specialist & she ordered a pH probe which is scheduled for next week. I increased her prevacid on my own which seemed to reduce her symptoms a little for a while, but some days she still jerks & shrugs & fussed like this. As a physician myself (but not a pediatrician) I am almost 100% positive this is a variation of Sandifers. She's also now occasionally exhibiting the back arching of which I'll post another video.
My 7-month-old grandson has been doing this same decerebrate-type posturing since age 2 months along with arching and shuddering during feedings...now seizure-like episodes without any postictal phase after eating. your little girl's arm posturing is exactly like my grandson does..he had a normal 1-hour EEG an now being treated for possible Sandifer's syndrome until we have further testing...how did you beautiful little girls testing turn out..any diagnosis yet?
Please don't vaccinate this beautiful baby for fear of adding to neurological issues.
Stephoodlee 1 week ago
We got the pH probe done & she DOES have reflux which correlated with her movements. A small tube was placed down her nose into her lower esophagus for 24 hours to monitor the level of acidity that made its way up into the esophagus. The tube was tethered to a device with buttons to push when she had meals or when she looked like she was in pain or having strange movements. The times I pushed the button definitely correlated with these movements...poor dear! The GI specialist switched her meds.
schluntzmd 3 months ago
We finally got in to see the GI specialist & she ordered a pH probe which is scheduled for next week. I increased her prevacid on my own which seemed to reduce her symptoms a little for a while, but some days she still jerks & shrugs & fussed like this. As a physician myself (but not a pediatrician) I am almost 100% positive this is a variation of Sandifers. She's also now occasionally exhibiting the back arching of which I'll post another video.
schluntzmd 4 months ago
My 7-month-old grandson has been doing this same decerebrate-type posturing since age 2 months along with arching and shuddering during feedings...now seizure-like episodes without any postictal phase after eating. your little girl's arm posturing is exactly like my grandson does..he had a normal 1-hour EEG an now being treated for possible Sandifer's syndrome until we have further testing...how did you beautiful little girls testing turn out..any diagnosis yet?
kasana01 5 months ago
What was the diagnosis??
2ofaklein 5 months ago
no
TheNyla1234 5 months ago