Sandifer's Syndrome

[Nikki Villarreal]

Hi, My daughter Presley is 22 months and we have recently been told that there is a possibility that she may have Sandifer's Syndrome.  At 4 months she started having seizures, she is taking Phenobarbital and has not had a seizure since January 2000.  I searched and searched and can't seem to find anything on this syndrome can you help or maybe direct me in the right direction.

Thank You!

[Debbie Collins]

My son who is 8 1/2 months old was diagnosed with Sandifer's in January 2001.  In September of 2000 he had his first "seizure".  After going through a complete neurological workup (everything was normal) it was suggested that he see a ped gastro Doc.  He was never placed on any seizure meds.  Looking back on everything I wonder why the Docs never picked up on the fact that these "seizures" only happened when he was drinking his bottle.  he had a PH probe done in January which showed he had 200 episodes of reflux in a 24 hour period.  He is a very happy baby and has a good apetite.  currently he is taking 2mls of Zantac twice a day.  We are feeding him Enfamil AR and reading labels on all food he receives.  His diet is Chicken, Turkey, Ham, carrots and green beans, pears and peaches.  Everything else seems to cause problems.  He sleeps elevated and is held upright for thirty minutes after each feeding and meal.  For awhile he has done well but is now starting to spitup again - I think it's time to increase the zantac.  I'd like to hear more from parents with the same situation, and any info would be a big help!
***@****

[shelly]

My 13 month old son has Sandifer's Syndrome. He has abnormal head movements due to gastroesophageul reflux. We have found that he does much better if we feed him standing up. We also thought initially that he was having "mini" seizures. He is just recently not wanting to eat very much. They are performing a ph probe and endoscopy next month. He is on Zantac and that seems to help a little. They also want him on a motility, but I want to wait to see the results of the tests. He already had a barium swallow when he was 7 months that confirmed reflux. The abnormal posturing and head movements when eating are very suggestive of Sandifer's. Most doctor's I have talked to have not heard of Sandifer's and there isn't a lot of info that is for sure. They feel that they move there head and posturing to aid in swallowing and extending the esophageus ( I think that's right?) anyway good luck.

[Kevin Kennedy, Ph.D.]

Dear Ms. Villarreal,

As you probably already know, Sandifer Syndrome is a pretty rare type of torticollis in infants, often associated with gastroesophageal reflux secondary to hiatal hernia. If you look at the National Library of Medicine's PubMed listings, you'll find a number of citations you can inspect. Go to the following web site: (http://www.ncbi.nlm.nih.gov:80). Dr. KDK