Many of you saw our hospital stay last week, and I’m here to bring awareness to a specific syndrome and tell you about our stay.
To begin, you should know that all babies have some type of reflex aka spit-up. However, in our lively little boy Dax we have much more than the normal reflex. Instead, we have something called GERD. GERD stands for gastroesophageal reflux disease. Dax began his life with forceful spit up in the NICU. And thanks to our family history of milk allergy, our neonatologist switched him immediately to a hypoallergenic formula called Alimentum. Unfortunately, just 6 weeks into his life the Alimentum quit working. Dax began screaming after every bottle, forcefully spitting up, and eventually projectile vomiting. A quick trip to his pediatrician (thank goodness for Old Pueblo Pediatrics!) and we had an elemental formula called Neocate for milk allergy, new meds and went to the hospital just to ensure it wasn’t pyloric stenosis. A quick ultrasound said it wasn’t and we went on our way.
We switched the formula and saw almost instant relief for Dax. However, that didn’t last long. Overnight, Dax began worsening. His projectile vomiting became after every bottle, and though I felt crazy another trip to the pediatrician was warranted. Again, a huge thank you to Old Pueblo Peds for not making me feel crazy. We arrived at the office and a quick weight check revealed Dax lost 3 ounces over night. For a little guy like him, 3 ounces is a lot! Our fear of dehydration and additional weight loss was enough to land us an inpatient stay.
I’ll be honest, there’s nothing more infuriating than doctors who have their mind set on a diagnosis and don’t look outside of the box. Every doctor we saw there was sure we had the same thing as we had checked for the day before, pyloric stenosis. We got an ultrasound done again, and again it was normal. He was still projectile vomiting. We ran IV fluids and over the course of a few days, we found still nothing. It wasn’t until he had a seizure like episode that I brought up that they considered his reflux to be severe. He was diagnosed with Sandifer’s Syndrome. Sandifer’s Syndrome is an infants response to the pain caused by the reflux. His reflux was so uncontrolled that it caused him to arch his back, turn his head to one side and flail his arms open. It wouldn’t last long, but enough to concern me. The only way to fix Sandifer’s Syndrome is to control the reflux.
We started the new med, and it’s not an instant fix. But, we can see it starting to slowly take its effect. It was deemed that we could go home, mostly because we wouldn’t be doing anything different at home than at the hospital.
We’ve been home for a few days now, and we still sometimes projectile vomit. But, the meds are helping him not to be in as much pain. Additionally, we need to purchase a few things to keep him comfortable until he outgrows this. Already purchased are Dr. Brown’s Bottles (hate these butC they help him), a wedge for his crib, an additional swing (so he can keep in motion), and more crib sheets because oh my gosh the amount of laundry I’m doing. Oh and bibs! We currently love Copper Pearl bibs and I have a feeling some will be under the Christmas tree.
That’s all for now! We’ll be back later this weekend with more posts. So stay tuned, and happy almost thanksgiving!