@giot This sounds exactly like what happened to my boy twin! He did indeed have reflux and was given medication for it. He’s been on Similac Neosure since birth, but we tried other formulas to rule out formula sensitivity. It was terrifying to see him choke and he’d literally being spewing formula and mucus out of his mouth and nose, not able to catch his breath. Once he was put on the medication it got better and he’s now grown out of the reflux. He’s almost 7 months old now. I would definitely talk to GI doc and maybe change pediatrician as well. Sounds like they’re not listening to your concerns and I feel like that’s really important. You know your babies best so you keep pushing them. I hope they give you answers soon!
iheartmacsgaydiack
New member
@iheartmacsgaydiack I did and tithe first doctor said 6-8 months before they could see him so I left. The second pediatrician said that the G.I doctor won’t do anything more than what the hospital did so no referral from her either. I’m searching for a third pediatrician now and I’m the meantime I’m going to try to get him admitted.
@giot A pediatric ENT is the way. Do you have a camera on him when he's sleeping and has these episodes? If not you you need it. This definitely does sound like silent reflux.
We had to keep seeing 4 different pediatricians, a regular ER trip and a pediatric ER trip before anyone would listen. I honestly can't remember how we got the ENT referral (I blame this on no sleep because I would be so afraid for my son). Keep going to a pediatrician to get the referral. If not, see if you can get a list of pediatric ENTs from your insurance company and then call those offices. A GI doctor is not the first step. That ENT should push you to the correct doctors and hopefully you get a team of doctors to help you and your son.
I am so sorry you are going through this. I know what it's like to see him hurting and no one will listen.
We had to keep seeing 4 different pediatricians, a regular ER trip and a pediatric ER trip before anyone would listen. I honestly can't remember how we got the ENT referral (I blame this on no sleep because I would be so afraid for my son). Keep going to a pediatrician to get the referral. If not, see if you can get a list of pediatric ENTs from your insurance company and then call those offices. A GI doctor is not the first step. That ENT should push you to the correct doctors and hopefully you get a team of doctors to help you and your son.
I am so sorry you are going through this. I know what it's like to see him hurting and no one will listen.
@marc30 I will do just that. I completely forgot I could do that. I’m also open to driving out of town for doctors at this point because I’m getting no look in my city. Unfortunately I just stay woke all night and look over into his crib every few minutes because I’m so scared. The lack of sleep makes my memory horrible. Thank you
@giot Oh I get this. I would hear his head and body wiggling on the mattress. And the gurgling sound of stomach acid and milk in his throat (it literally sounds like congestion in the nose but that congestion was actually in his throat) It would wake me from a dead sleep. And it happened so often every night for four months. He does still sound like this but it's not while he's laying down on his back anymore and it's often when he's upright. He's on Nexium and it's a life saver. His team is going to try weaning him off soon. We have our fingers crossed. And reflux is still the reason we have our 9 1/2 month twins still sleeping in pack n plays in our room.
I hope you find an ENT soon.
I hope you find an ENT soon.
90dayfiance
New member
katrina2017
New member
@giot oh my gosh, i’m thinking of you. my baby B had multiple episodes of choking / stopping breathing too.. they did every test they could, even 2 spinal taps on my poor tiny newborn baby, but in the end they just told me—“reflux.” time helped way more than any of the 100 things we tried..
you’re doing amazing, you can be strong through this scary time. keep advocating for your baby!
you’re doing amazing, you can be strong through this scary time. keep advocating for your baby!
@giot First-sorry this is happening! I’d be stressed and terrified of these episodes happening!
YOU are the customer so go ahead and switch docs! These ones you’ve been seeing don’t sound very helpful. The fact that they won’t refer you is a red flag. If you get a second opinion and they still won’t refer you then call the GI yourself. I found out that unless your insurance requires it then you don’t need it.
We were told it wasn’t pyloric stenosis but the procedure for that was an ultrasound. We explored all options before I learned that reflux is common in preemies. We actually switched docs because they kept saying we were the problem.
but we are the customers and so are you! So shop around and find someone who will take you seriously.
As others have said, I’d stop with switching milk so often. Try one at a time. I had a pediatrician tell me it can take up to two weeks for the body to adjust. My Baby B had awful reflux to where he would projectile vomit. Then both babies would spit up through their noses. Sometimes hours after eating. Our old pediatrician wouldn’t prescribe anything because they were “happy spitters” aka gaining weight. Then one baby had an episode in the office and I demanded medicine. We switched to the preemie nipple and started Pepcid. We were warned it could take a few days to get in their system but it seemed to help. I don’t remember exactly what age they grew out of it but as others have said it was probably around 4 months.
YOU are the customer so go ahead and switch docs! These ones you’ve been seeing don’t sound very helpful. The fact that they won’t refer you is a red flag. If you get a second opinion and they still won’t refer you then call the GI yourself. I found out that unless your insurance requires it then you don’t need it.
We were told it wasn’t pyloric stenosis but the procedure for that was an ultrasound. We explored all options before I learned that reflux is common in preemies. We actually switched docs because they kept saying we were the problem.
but we are the customers and so are you! So shop around and find someone who will take you seriously. As others have said, I’d stop with switching milk so often. Try one at a time. I had a pediatrician tell me it can take up to two weeks for the body to adjust. My Baby B had awful reflux to where he would projectile vomit. Then both babies would spit up through their noses. Sometimes hours after eating. Our old pediatrician wouldn’t prescribe anything because they were “happy spitters” aka gaining weight. Then one baby had an episode in the office and I demanded medicine. We switched to the preemie nipple and started Pepcid. We were warned it could take a few days to get in their system but it seemed to help. I don’t remember exactly what age they grew out of it but as others have said it was probably around 4 months.
@ruthiedee The ones I called said I needed a referral sadly. So I gotta find a pediatrician that will refer me or give him meds. I’m stressing because I’ve been begging since October. Even had a pediatrician tell me it would take a while to write a referral and I’m like huh? I called the G.I doctor myself and they had opening ms within 2 weeks. I just don’t understand why they won’t help
holly65584
New member
@giot If you think it’s reflux, my advice is don’t say he chokes. Just say he vomits everything up after eating. I think choking is more when you can’t breathe (maybe that’s the case, but I never said choking and they immediately thought it was reflux).
My son was on Neocate (low residue, no dairy), and he had reflux for the first 6 months. Up every 2 hours and had to be held upright for 30 mins after each feed. The vomiting and back arching was terrifying and heartbreaking.
Anyway, he got through it. They put him on omeprazole (which I believe is Zantac), they told me it would take away the pain but not the vomiting, which is pretty accurate. It’s so unfair they just have to suffer through this.
My son was on Neocate (low residue, no dairy), and he had reflux for the first 6 months. Up every 2 hours and had to be held upright for 30 mins after each feed. The vomiting and back arching was terrifying and heartbreaking.
Anyway, he got through it. They put him on omeprazole (which I believe is Zantac), they told me it would take away the pain but not the vomiting, which is pretty accurate. It’s so unfair they just have to suffer through this.
seatpost12
New member
@giot One of my breastfed babies does this after every feed. He coughs up thick mucus sometimes but it's never been so significant that I've had to help him in any way. He had RSV and an abundance of colds /flu. He doesn't like food very much but when he does drink he coughs and splutters during & after feeding. We've been to a paed and they told.me if I was formula feeding his recommendation would be to thicken the milk..however I can't thicken breastmilk so I just make sure to keep him upright longer, which usually helps.
keitumetse
New member
@giot Have they done a swallow test? My twins both experienced very similar symptoms. Thankfully ours were diagnosed very quickly with extreme reflux and prescribed a strong specialty medicine in addition to a swallow test. We had to use a low flow nipple and add a thickener to their formula. The combination of the medicine and thickener took care of everything.
jennalking1992
New member
@giot My daughter did the same thing. It was reflux they put her on medicine and I also took her to a chiropractor. At about 6 months (I took her to the chiropractor the entire time) she started spitting out her medicine - I stopped giving it to her but kept taking her to the chiropractor and she never needed the medicine again. She is about to be 12 and thriving 
I hope you get results soon and your precious baby finds relief!!
I hope you get results soon and your precious baby finds relief!!jennalking1992
New member
I should also mention I did the prop up after every feeding - and my daughter only had breast milk which she projectile vomited out of her nose.
@jennalking1992 Im definitely going to call a chiropractor. Unfortunately he’s choking on the super hyper allergenic milk too so I’m out of other options until I can get him to a new pediatrician at the end of February
@giot Solidarity. My 26 weekers did the same thing for what felt like forever. We tried so many things and were so scared all the time. We had bulb suctions in every room of the house. I wrote this post in the NICU parents subreddit when we were in the thick of it. Lots of solidarity there too with detailed description of what our twins would do: https://www.reddit.com/r/NICUParents/s/AVRBwmh7qT
The thing that ended up working for us was upping the nipple size. We think working less hard to get the milk out helped them stay more relaxed and puke less. Sounds weird, but getting away from the transition and working on size 1 made a noticeable difference. But ultimately we just had to watch and wait for them to get bigger and eventually it stopped altogether.
The thing that ended up working for us was upping the nipple size. We think working less hard to get the milk out helped them stay more relaxed and puke less. Sounds weird, but getting away from the transition and working on size 1 made a noticeable difference. But ultimately we just had to watch and wait for them to get bigger and eventually it stopped altogether.