Posted By Posting
Aug 02, 2013
3 1/2 month old, severe reflux, sandifer syndrome
Hello everyone. I'm new to the world of reflux with my second child. My little girl is 3 1/2 months old and was diagnosed with acid reflux when she was 2 days old. Her story is long, if I wrote it all out I don't think any one would read it!! and we have been through so much in her short 3 months. She was diagnosed with Sandifer Syndrome a few weeks ago. The GI said it was "classic" sandifer syndrome. He said she had it pretty bad but that he has seen worse. It is a very frightening thing to watch. She arches her back, turns her head one way and her legs the other and her eyes role just like she is having a seizure. Sometimes she even loses consciousness which the GI doc said has been known to happen similar to a post seizure state. They tell me it is a benign condition and that she will outgrow it. I had a baby sitter lined up for her to start watching her when she was about 4 months old. The baby sitter is scared to keep her. Megan has had numerous unconscious episodes which they are attributing to the reflux and has stopped breathing once. She wears a Snuza movement monitor and it alerted me that she wasn't breathing. When I first saw her in her bassinet I thought she had died, but when I picked her up she stated breathing again. She takes Prevacid. We have to get the adult tablets and dissolve them every morning because my insurance won't cover the solutabs. I guess I'm really just looking to connect with people that have "been there" with reflux and specifically with Sandifer's Syndrome. I want to know if there is anything I can do to make her more comfortable. She is only taking about 20 oz of formula a day sometimes less and is almost 13 lbs. It seems like she just isn't eating enough but her doc says she is gaining weight fine and not to worry. She is 50% for height and weight with another check up in a few weeks. Her reflux seems to just be getting worse, which the GI told us to expect until she hit 4 months, then she should start to turn the corner and start getting better. I have tried to increase her formula from 4 oz at a time to 6, but she gets to the 4 oz mark and starts exhibiting arching and twisting and eye rolling from the sandifer syndrome and I know she is in pain so I don't give her any more. I'm not sure what to do really with her feeding and the docs aren't much help.
Aug 05, 2013
Hi. My little guy is 6 months but we went through the same with the feeding. He did not have Sandifer Syndrome, however we were lucky to get 16 oz in him a day. The peds weren't very helpful either because like your little girl, he was growing and gaining weight but he was up every 45 minutes all day but wouldn't eat more than 2 oz at a time. We got insurance to cover our solutabs by having our ped call and tell them this was the only option because he would vomit up the liquid form. The tucker Sling really helped our guy get some rest and helped keep the reflux down when he was sleeping. Once he started moving around he didn't want to sleep in it anymore but I have an extra one and am happy to send it to you free of charge if you need it. Just let me know. I wish I could give you more info but if you have any specific questions, just let me know and I will give you whatever knowledge I have learned from this horrendous experience with reflux
Check with your
doctor first!