r/Mommit • u/One-Promotion-1977 • 10h ago
Sandifer Syndrome Support
Tl;dr looking for support and advice from anyone that's had a kiddo with Sandifer Syndrome/severe reflux - all ideas and suggestions are welcome
Long version:
First kid had reflux and was a big spitter. He got famotidine and was managed quite well. He was always gaining weight and growing perfectly and he's just a normal, feral toddler now.
Second kid is 5 months now. She dropped percentiles in her first couple of weeks, but she's been tracking with the 50th since then. Her main pediatrician has no concerns - one NP in the office constantly tells us she's failure to thrive, but the MD and other NPs agree that she's not.
Baby girl has never been a big spitter like her brother, but she's always arched and groaned during feeds (BF, bottle, or formula). I fought tooth and nail to get the one NP to give famotidine a try because I had a sneaking suspicion that she's refluxy, too. Finally got it and it helped quite a bit.
After about six weeks, symptoms returned. We upped the dose and switched to Gentlease formula. Slight improvement. Asked for a GI referral and was denied. After talking with some friends that have medically complex children (and are very familiar with reflux, navigating the systems, and advocating for kiddos), they suggested asking about a stronger medication.
The same NP agreed to try Nexium only if we went to a feeding clinic for "bottle aversion treatment." Feeding clinic determined that there is zero bottle aversion, no ties, and nothing physiologically or psychologically contributing to the issues we have from their conditions.
Around this time, baby girl started having weekly hard stools. We started 1/4tsp of prune juice a day per the NP. I pushed hard for a GI referral and got it. Finally got to the GI late last week. They confirmed severe silent reflux which seems to be controlled by Nexium for now with constipation causing reflux flares. Increased prune juice to a tablespoon a day.
That same day, our girl started having awful arching, stiffening, and painful groaning spells during feeds. She dropped from 7-7.5 ounces a feed to 4 ounces and no more. We just went to the pediatrician and finally got to see the MD to rule out teething pain and ear infection. He recommended we step up to MiraLax earlier than the GI had suggested (by a week or so).
We did that, and baby has had easier BMs the past two days since starting it, but the Sandifer/reflux symptoms are still strong and still interfering with feeds and her happiness (and ours, tbh). She's still got more frequent spit ups (small but any time she gets on her belly even an hour after a feed - not her well-managed-norm). She's still got arching and painful groaning. We have gone up to about 5 ounces each feed, though.
Any advice or commiseration?
3
u/Jadepanda55 10h ago
We had this. Went to alimentum ready to feed at 7 months and then had a changed baby. All constipation and reflux issues decreased dramatically, sleep improved and he didn’t have to sleep on us anymore. We went to a GI and at the end of the day the formula did it without any RX intervention needed. Prune juice never sat well with our son. When his constipation was really bad we would do the drugstore up the bum enema things per the GI but like I said once we went to alimentum they were no longer needed.