Hi everyone, looking for advice/experiences because I’m feeling really torn on what to do next for my 11 week old daughter.
Back story of the last 11 weeks:
We switched her to Alimentum RTF at only 1 week old because she started having blood in her stool, and our now 2.5 year old son had CMPA as a baby with very similar symptoms that was confirmed with testing. Her stool itself was never formally tested, but because of the blood and our family history, we made the switch. The blood stopped and she seemed much more comfortable for about 3 days.
Then around 3 weeks old, she started having more reflux symptoms. At first it was more “silent reflux” symptoms than actual spit up (acting like stomach contents were coming up without always vomiting), but then things escalated quickly.
At 4 weeks old she was diagnosed with pyloric stenosis after projectile vomiting entire feeds and having a very scary episode, and she had surgery immediately. Her first 3 feeds after surgery were AMAZING — she was back to her happy, calm, comfortable 2 week old self — but then after the 4th feed the reflux symptoms returned. The projectile vomiting was gone, so we knew the pyloric stenosis itself had been fixed, but the discomfort continued.
Her pediatrician started her on famotidine at 4 weeks old. It seemed to help slightly with the reflux symptoms, but it also seemed to make her SO fussy almost like gas pains. We adjusted the dose several times and eventually landed on twice a day dosing, but she still seemed very uncomfortable and fussy, especially around feeds and spit up.
About 4 weeks after starting famotidine, her pediatrician added Gelmix to thicken feeds. That honestly seems to help keep most of the spit up down, but not the discomfort itself.
Now at 11 weeks old, after 6 weeks on Pepcid/famotidine, we decided to stop it because I truly started wondering if it was contributing to the continued fussiness and gas pains since she almost always seemed worse after getting it.
Her last dose was yesterday at 7am. Last night she actually had minimal symptoms and slept from 10:30pm–7:30am. Her first feed this morning was great — no screaming, arching, or spit up.
But as the day went on, all of the reflux symptoms and discomfort returned and progressively worsened again:
inconsolable crying after feeds
major back arching during/after feeds
gagging/coughing episodes
waking up gagging
difficulty being laid flat even after paced feeding + staying upright 30 mins after feeds
constantly wanting to comfort feed
sounding congested/raspy
frequent squirming/restlessness during feeds
only sleeping about 20 minutes at a time even while being held
Bringing knees to chest wanting to be scrunched always!
What makes this SO confusing is that she DOES still have happy/calm periods — usually about an hour after feeds while upright — but they only last maybe 10–30 minutes before the discomfort cycle starts again. She will eventually settle and sleep, which makes me constantly second guess whether this is truly severe reflux, CMPA/formula related some combination of all of them, or something else entirely.
Her pediatrician has now offered a trial of omeprazole while we wait to get into GI, but I’m nervous about starting a PPI and also wondering if maybe the formula itself is still part of the problem.(because I feel as if that kinda got pushed to the side with the pyloric stenosis stuff happening so soon after switching to alimentum)
Has anyone dealt with anything similar CMPA + reflux together? Did Alimentum RTF still end up not being enough for your baby? Or is this truly just reflux?
If anyone has made it this far thank you…We are just stuck and want her to have relief!