GERD diagnosis with 10 week old - will it ever get better?

[littlepebble]

Our baby boy was born 10th percentile (6 lbs 3 oz) and would down more food (formula initially then breastmilk due to supply issues) than he was supposed to the first month of life. We assumed he was compensating for my possible IUGR. He increased in percentile, just not dramatically, and he’s still proportional.

Around 8 weeks, he started coughing while awake and in his sleep and had an episode of projectile vomiting. The pedi diagnosed him with reflux and we started him on famotidine + ProGaia probiotics w/ Vit D + changed his formula to Nutramigen. He’s still combo feeding and I finally stopped dairy and soy the other day. It’s so hard as I love dairy, but I know I have to give it up for the sake of my son. I was also concerned the onset of reflux might have been associated with Legendairy supplements/moringa/brewer’s yeast I was taking the week prior to his diagnosis to increase my supply. Per his pedi, the supplements shouldn’t have triggered anything.

We followed up twice due to continued coughing and projectile vomiting and due to no improvement and baby is now 2nd percentile at 10 weeks weighing 10 lbs, his med has changed to pantoprazole (not Nexium due to insurance giving us a hard time) and we’re pending the med through mail order.

We’re quite concerned about his weight gain as it seems he’s been having feeding aversion likely due to associating food with pain and only eats about 1.5-3.5 oz at a time and the pedi said at this point, he should be eating AT LEAST 4 oz every feed. He’s been falling asleep at the bottle throughout the day (we even tried to up the nipple size to 3 and pace feed but is sometimes successful) and at night he wants to compensate for the day and will eat an oz like every hour until he consumes like 5-8 oz before bedtime.

It’s been quite exhausting feeding every hour throughout the day and evening to make sure he eats enough as I can spend 2 hours feeding him 2 oz. Any of you guys have success with your baby overcoming GERD and eventually gaining weight?

Thanks in advance!

 

[perrin]

@littlepebble Babys with gerd tend to eat small frequent meals. It's annoying but i wouldn't necessarily jump to the feeding aversion conclusion YET. It might be the only way for him to eat comfortably and this is how he's doing it. Reflux does go away in time. You might need to resolve the reflux - either with the right meds or with time - before you resolve the feeding. What I would recommend is to never pressure him to eat more than he's willing to at a time. That will indeed create an aversion. Im sorry it's frustrating, my baby was just put on meds after a gerd flare up caused an aversion and he's been doing better (but too soon to tell), but he's always been a snacker. You definitely have to tackle reflux before you tackle his eating bc it literally causes him pain to eat more I assume and forcing him to eat more will cause an aversion.

 

[phdzaster]

@littlepebble OMG. I literally just went through this! Like almost to the tee! I’m not excited but I’m just so surprised because my daughter’s situation looked crazy similar to what you’re going through.

Background: My daughter was also born 6 lbs, 3 oz (she’s 12 weeks now) and literally at 8 weeks, she had her first projectile vomit episode. Luckily, we had our 2 month appointment that week, so we were able to bring it up to her pediatrician. I had been telling the doctor that she had a problem with reflux since the 1 month visit but I was essentially ignored. After bringing up the projectile vomiting, she was prescribed Pepcid. I thought that would make things easier for a bit. I was wrong.

The entire next week, she projectile vomited her entire bottle once a day, until 6 days later it became every single feeding. We set another appointment immediately once it became every feeding. Our pediatrician was out, so we had to go to her colleague. The colleague essentially ignored everything we said and just pushed non-milk formula (Elecare) on us and sent us on our way. She didn’t keep anything down for the rest of the day, so I said screw that took her to the ER.

They said she had lost weight over the course of that week and was dehydrated from not keeping anything down. That filled me with rage because she wasn’t okay and we were ignored. Spent an entire week at the children’s hospital and had so many tests run just for them to say the only option was a feeding tube. I spent that entire week reading medical journals, studies, symptoms and treatments, everything. Children’s hospital didn’t do anything at all.

She normally consumed around 26 oz per day and during weeks 8 and 9 was only wanted around 10 oz per day. It was scary and stressful. I opted into feeding her an ounce every hour from 12 am to 12 am for days to make sure she had something. I got no sleep for an entire week, but I couldn’t sleep knowing she wasn’t okay.

But over time (weeks 10-11) she slowly started taking in more. We had a follow up with a gastroenterologist earlier this week and, at the weigh in, she had gained 1.5 pounds since her hospital stay. They still couldn’t figure out what was wrong (I’m pretty sure it’s GERD) but could figure out how to leave us with a $5k bill lol smh

I can’t say for sure that things will work out in the same time frame or in the same way that things did for us, but I’m hoping and praying that things do get better for you all soon. Just wanted to share my story in hopes that you find some optimism for your situation in it.

 

[jamilet]

@littlepebble Hey there, mine has GERD too Currently 5mo. When he first got diagnosed around 10 weeks, he would cry and cry every time we tried to feed him - the doctor said a food aversion had already started. We had to use multiple soothing techniques to soothe him to sleep in order to feed him - he would reflexively suck while sleeping, especially if we gently tapped on the bottle and sat with him for an hour, and somehow that strategy kept him on his growth curve Once we started giving him meds (omeprazole), within two weeks he got MUCH calmer during feeds, without us having to use the soothing techniques anymore. He continued eating a similar amount for a while, and right at the end of month four, he started taking much bigger bottles all of a sudden. Baby GERD is a beast - thank goodness there are treatments for it. Wishing you the best, OP!

 

[littlepebble]

@jamilet Hi there! Have you guys stopped omeprazole? Wondering when we can finally stop Nexium. Our pedi wants us to continue it until his coughing subsides.

 

[jamilet]

@littlepebble Funny you should ask! We did just try stopping it two weeks ago. Everything was fine for 10 days, and we were excited. But around day 10 the GERD symptoms started coming back, and then intensified. It didn’t get as bad as it was before, but LO does seem kinda miserable today :/ We already restarted omeprazole a few days ago, but we’re expecting to need to wait almost two weeks for it to kick back in again Our ped said to try stopping it after the first six weeks or so because the GERD can resolve spontaneously and you never know unless you try, so given that recommendation I think it made sense for us to try at this point even though the outcome sucks, lol. Our baby was never coughing much though - idk if that would change things. For reference he’s currently 5mo 22 days.

Has the Nexium been helping for you guys?