I thought Sandifer's was an involuntary neurological reaction or spasm. Typically but not always in children with mental impairment. Thus the reason it can be confused with seizures.

I've been reading threads lately making it sound like it's a voluntary reaction to pain.

So which is it?

The GI and Neurologist called what Sebastian was doing Sandifer’s. He would put his head to his shoulder and have like a little spasm thing. The Neurologist said it was not something he was doing intentionally, but an involuntary pain response. He said it was different then a tick or seizure, but I am not exactly sure how.

Neck tilting in infants, ei hyperextension of the neck with torticollis mainly associated with GERD>

Ditto what Katey said. Our GI told us it is very common in children w/ GERD and will alleviate/disappear when medication is properly managing the reflux.

Ditto what Katey said. Our GI told us it is very common in children w/ GERD and will alleviate/disappear when medication is properly managing the reflux.

Everything I have read says it's pretty rare.
How do you know if it's voluntary or involuntary?
I guess I'll just bring this up at tomorrows appointment. Maggie's arching and looking at the ceiling is getting worse as her reflux episodes are getting worse. I'm not quite sure what to think.

I am not really sure how to tell. Our GI was very non chalant (sp) about it as it is very common in children w/ GERD. I think it's rare for children w/ mental disabilities. If her reflux is bad, that will case the Sandifer's to flare as well. Jack's Sandifer's is awful when he is sick or having a flare up. As soon as he is feeling better or w/ a med increase the symptoms alleviate almost immediately. It's just there way of trying to get away from the refux material from coming up. KWIM??I video taped Jack's and showed it to his GI. I would definetly bring it up at your appt. Maybe she needs an increase in her meds? Hope she is feeling better soon.

We're quite maxed out on meds. We've been avoiding surgery for awhile now. If meds stop then we stop fighting it.

Just wanted to wish you good luck at the GI Lena:hug:

How do you know if it's voluntary or involuntary?



I am not sure. When Sebastian was doing it, it did not seem like something he was doing on purpose. at his worst he would do it every few seconds and it went on for over an hour. He would have episodes like that, and then he would also just do it for a few seconds off and on throughout the day.

Hope everything works out Lena, and that Maggie is feeling better soon. Let us know how everything goes w/ the GI. Sending prayers your way!

Below is my daughter's Sandifer's story. I've read that it is what they do to compensate for the pain. I think it is involuntary like when your eyes tear up from cutting an onion. Kind of like a defense mechanism.

My daugther was diagnosed with GERD and Sandifer's Syndrome in January 2006. We moved and saw a new peds GI and he says outside of some posturing (the neck tiliting to elongate the esphagus) you don't get neurological involvement (ticks or weird eye movements like my Vivi does) without some underlying neurological problem. Now 3 doctors have decided that her "eye" episodes were in fact seizures. She also had 3 tonic clonic (formerly called grand mal) seizures in a 5 day period in Nov 2006. We've been having a million tests run since then and still can't figure out what is causing them. She's on 1.5ml TID Tegeratol and her episodes stopped for 8 weeks and then started again on 2/6. We're waiting on a bunch of blood test but so far EVERYTHING has come back as normal. Her GERD has resolved (I think it was 90% due to undiagnosed food allergies and now that we know what she's allergic to she's had no exposure and therefore no GERD). EEG, CAT scan, EKG, MRI and a host of other things are all normal. If you'd like to see videos of what her spells look like (they were orginially diagnosed as Sandifer's Syndrome) please email me at rachkuyps at yahoo dot com and I can send you a youtube link since I don't have enough posts to PM or add links. If anyone else has a child who does was Vivi does in the video and you know the cause (or even if you don't) please contact me. We're searching for answers and are delaying getting pregnant with #2 so we'd really like to figure it out soon! Thanks!