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Preemies
anyone with lots of reflux experience?
my daughter has reflux.. and they've just decided to put her on meds. her's isn't really bad or anything.. but i'm interested in the topic and ways to help it, meds that work, surgeries, when they outgrew it, etc.
if anyone has had a totally gnarly reflux experience i'd like to hear about it. and if you'd be willing, have you do a guest blog post.
i don't have much experience with this and would love firsthand information.
thanks ladies. you rock!
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Re: anyone with lots of reflux experience?
Brendan had reflux something terrible and then about 2 months ago it just stopped, out of nowhere.
He has been on the following combos: reglan and zantac, zantac and prevacid, just zantac, just regland, just prevaicd, eyrthromycin and zantac (this is the one that worked for him, we called it our miracle drug!).
We were going through anywhere from 5-10 outifts a day at some points for him. And about 10-15 burp cloths a day, plus blankets. It was a mess to the point that we weren't going anywhere.
If they give you the prevacid solutabs don't be surprised if the spit up is purple. Noone warned me about this and I was scared when I saw it.
His pediatrician and GI said it would get better around when he turned one, we thought they were nuts. No joke it did and life has been great since then.
Robbie was born with an incomplete diaphragm which caused a hiatal hernia. (His stomach pushed up into his esophagus.) it's very common in adults, and very, very rare in newborns. (the NICU director said he'd seen it twice in 18 years.)
He's had surgery twice.
The first time, they reattached his diaphragm, and then did a fundoplication (they wrap the upper part of the stomach (fundus) around the esophogus, so that when it contracts, it closes off the esophogus, theoretically preventing anything from coming back up. They also put a G tube in at that time because he wasn't taking all of his feeds by mouth.
He came home and started spitting up right away (honestly, worse than before the surgery, but that may have been age related, not stomach related.) They don't know why he still spits with the fundo. It looks good. It's in the right place and appears tight enough, but Robbie always manages to defy the odds.
He was on Zantac, pepcid, prevacid suspension. The prevacid suspension worked great at first, but it's very unstable and as the meds would age, he'd get more miserable. As long as we didn't give him any formula, he didnt' spit a lot, but he would scream in pain all the time. He didn't sleep. Then we switched to prevacid solutabs and things improved a lot.
But then he stopped eating.. the pain was killing him. He ended up in the hospital for FTT, decided he needed another G tube (his had been removed because he'd been eating great) so we were scheduled for another surgery. The surgeon then ordered another upper GI and found that his hernia had recurred. So they did it all again. And this time they found adhesions from the previous surgery, so they removed those, too.
After the surgery he was still having a lot of pain. We'd feed him through the tube and he would again scream in agony. Finally we switched to Nexium which helped some, but really, what finally got him over the hump was drastically reducing his feeding rate. Instead of feeding him in 15 or 30 minutes, I did it over 90. It was a huge PITA because you're practically constantly feeding him, but he went from screaming in agony and spitting up literally 20x/day, to NO crying at ALL and spitting a very small amount maybe twice a day. Some days are worse, of course, there are always flare ups, but some days are better, too.
It really came down to how volume restricted he is. I think with all the trauma his stomach has been through, it just doesn't stretch like it should. He's improved some. I'm now able to get a feeding into him in about an hour, and I'm working towards 45 minutes. And he's taking some food by mouth (solid food only, no milk. All milk goes in the tube.) so that's an improvement.
Along this path, we eventually found a formula that didn't make things worse- Good Start. Turned out he was allergic to corn syrup, which even the hypoallergenic formulas have and once we got away from that, he did well.
Anyway, that's our story. Ask anything.
A great website about reflux and meds is Marci kids.
https://www.marci-kids.com/index.html
My Blog
Cameron & Evan have been on reflux meds since the day they came home from the NICU. It got progressively worse until they were 10mos old actual age and I finally convinced the doctors they had a wicked case of silent reflux. They were diagnosed as FTT and then the silent reflux became violent reflux and they were put on GJ feeding tubes to decrease the amounts they were vomiting. The vomit got worse because the Gj tubes were migrating in too far and causing their pylorus sphincter to stay open, which then caused them to spontaneously vomit large amounts of the nastiest green and yellow bile at all hours of the day and night. They would give a little cough in their sleep and then start spewing like The Exorcist. And it's not like there was just one baby doing this, I had two. After many arguments with our GI's we switched the boys to G tubes and the spontaneous vomiting stopped but they still puke between one and six times over the course of every 24 hours. They refuse to eat by mouth and we are working with a feeding clinic to teach them to trust to eat food by mouth. They are 18mos old actual now. Most kids outgrow reflux by the time they are 10mos old. Reflux is hell and I hate it. If you want to read our story and see pics of our feeding tube experiences you can read my blog (link is in my siggie).
Oh, and the boys are on Prevacid and Zantac and Erythromaicin for motility. They take formula through their feeding tube, it is Neocate mixed to 30 calories. Good times.