Sandifer Syndrome

The past few days have been pretty scary around here. Hailey started grunting/convulsing, she has had an episode or two like this before that we thought were from constipation, so I gave her a glycerin suppository. That didn't seem to help, she continued to grunt and stiffen, then became very lethargic. I rushed her to the ER where she projectile vomited all over me, herself and the floor, then became lethargic again. They ran bloodwork, did an X Ray and couldn't find anything wrong. After 5 hours in the ER and a few naps in her daddy's arms, she seemed a bit more like herself, so we came home. She nursed, went to bed like normal, slept great and woke up her normal happy, giggly self. We got ready to go to her follow up appointment and she started the grunting/convulsing again. We ran to the doctor, didn't even check in just yelled to the nurse that we needed to see Dr. Molina right away. Dr. Molina ran in and checked her, looked at all the videos I had taken and took them to the Chief of Pediatrics who confirmed her theory that Hailey likely has Sandifer Syndrome. Sandifer Syndrome is an extremely rare condition (1% of infants with GERD have it). It's basically bad reflux that causes her body to stiffen her limbs and turn her head as a sort of defense mechanism against the pain. It is often misdiagnosed as seizures. She was prescribed some medicine for the reflux, but we are also going to get her an EEG to rule out actual seizures, since I had them as a child. Unfortunately the reflux medicine is unflavored and Hailey hates it. Hopefully we can figure out how to keep the medicine in and it helps her to never have one of these scary episodes again.