Can you please share any information on Sandifer's Syndrome. I have a six month old with severe GERD from birth. He recently started having seizure like spells and has a normal EEG. The Neurologist suggest Sandifer's Syndrome and has referred us back to Ped. Gastroenterologist. As we await an appointment and upper GI series I am trying to collect info. on Sandifer's. If you could send me specific info. on what it looks like I would be very greatful.
I have searched your site using EVERY variation of Sandifer's Syndrome spelling, capitalized, non-capitalized, etc. and I always get the same message: "Sorry no items found" That is why I posted the questions.
Did you every find info. We are having trouble with our daughter and her symptoms are turning her head all the way to one side and diverting her eyes in the same direction. She also has a normal EEG. She is currently 3 months old. Can you share any of your experiences with us?
I also am looking for information on Sandifer's Syndrome and have not had much luck. I would appreciate any and as much information as possible as well as anyone's experiences with this syndrome. My 12 mo. old son has this syndrome and unfortunately it was just recently diagnosed as my son has silent reflux which has been left untreated since he was 7 months old and he had a barium swallow which showed reflux. I am now scared that his system (lungs and esophagus) have been damaged as he has recurrent episodes of Bronchiolitis (not Bronchitis) which is a lung condition causing him trouble when breathing out. The peds thought he had reactive airway disorder. He has a few other problems which we are trying to figure out, but otherwise he is happy, nourished, and smart. I am very concerned that he is going to get sicker. He is currently on Zantac and they are starting him on a motility drug tomorrow. Anyone relate? Have advice? Know something? Hope to hear from you.
my son is now 14 months old and is still having a hard time with Sandifer Syndrome and respiratory problems. The pediatrician is performing an endoscopy and ph probe in a month. My son has too much pain eating in a sitting position so we feed him standing up and he tolerates the pain much better. Zantac seems to help some and we have not tried the motility agent yet as he keeps getting lower respiratory infections requiring oral steroids and I worry about the side affects. Although there is some comments about Sandifer Syndrome on the web there is no information besides a brief description. A lot of doctors do not even know what Sandifer Syndrome is. Hope to hear from anyone.
Sorry, but I know how little information there is and I never did describe what exactly my son does when he exhibits Sandifer Syndrome.
We first thought that he was having "mini seizures" because he would have abnormal head movements (either tilting, shaking, shrugging, flexing back, etc) and he would flex his torso at times. Sometimes his eyes seem to roll or flutter. Our experience is this occurred usually in his high chair and always either when he was eating or shortly afterwards (only realized now in hindsight). The "mini seizures" would last only a couple of seconds but occurred many times over. I thought from reading up on seizures that he could be having infantile spasms (which it is sometimes hard to distinguish between the two except for infantile spasms have a very abnormal EEG) or petit mal seizures. My son had an EEG, which was normal (thank God), which left me not knowing what was going on with him.
Prior to the EEG, my son had a Barium Swallow test to determine if he had reflux as he had a history of lower respiratory
infections and they thought that maybe silent reflux (bringing food up but then swallowing it again) may be causing his respiratory problems. He tested positive for reflux but they felt it was mild enough that it would not cause him problems. I still had no idea that his "seizures" could have anything to do with reflux.
My son's abnormal head movements got more and more frequent and intense, to the point that we were really concerned. I started to search the net under head movements. It was a very cumbersome search and no possible explanations
were appropriate for him until I stumbled across Sandifer's Syndrome and thought that it could be his problem since he had been diagnosed with reflux and the description of Sandifer Syndrome been abnormal head movements and flexing resulting from reflux.
I then videotaped my son's head movements and posturing as he sat in his high chair eating looking very uncomfortable and brought the tape to my son's pediatrician who said that the tape definitely showed my son displaying Sandifer's Syndrome.
Finally I saw the light. Suddenly it all made sense. I had thought that the reason he looked uncomfortable all the time was because he was full, instead he was in pain. I suddenly realized that all his abnormal movements were indeed directly connected to feeding times. His abnormal movements, they believe, are because he is trying to aid in swallowing and moving the food down through his esophagus, thus Sandifer Syndrome.
If I look back from the time he was born, I can now see how many of the traits and circumstances that he exhibited, that seemed unusual for a newborn and infant, were actually caused by silent reflux.
Sorry for rambling on but if I've managed to give even one person less of a heartache trying to find out what is going on with their child then it was worth it.
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