Posted By Posting
Jul 13, 2012
Medicine for reflux
Hi everyone! My husband and I are completely new to the topic of reflux and our baby doesn't give much time to read previous posts, so I decided to post a new topic with our concerns. Santiago is 8 weeks old. When he was born he was in the NICU for some respiratory issues and jaundice one week. He is exclusively breastfed, but he was given some formula the first days in the NICU. After a week at home the fussiness began. He is fussy pretty much all day... first he was eating without any trouble... but after a few weeks he started "fighting" with the breast. He has gained a lot of weight though, he is 15 pounds already. He wants to eat all the time but he usually gets upset when doing it… he is choking frequently. He spits up frequently and has vomited (projectile) once a week. When eating he arches his back, pulls away from the breast, etc. He also only sleeps stretches of 2 hours, no more, and he only sleeps "on" me or next to me on the bed but he will not stay in the crib and on his back more than 20 minutes. First the pediatrician just told us that it was colic… but we insisted and he prescribed Zantac for reflux… Santiago was on Zantac for a month and didn’t do anything. So, the doctor sent us to a specialist, who we saw this past Monday. The specialist diagnosed reflux based on all the symptoms I described above and prescribed: Omeprazole and Bethanechol plus some probiotics in case he is lacking the good bacteria. We just started with the medicine two days ago but we are not happy about giving our baby so much medicine, especially not knowing these will work for him. The new doctor said that we are supposed to see a 50% change in Santiago’s behavior aprox. in 2 weeks… if not, we have to come back and he will do an upper GI and an ultrasound. We hate for our baby to have to go through all that testing. Have any of you had some experience with the medicine I mentioned? Does this treatment make sense to you? The thing is we have not been around babies and this is our first, so we don’t know how babies are supposed to behave and how much fussiness is normal. Our biggest fear is to be exaggerating about his symptoms and putting him in a lot of medicine, which could have side effects, for no reason. But… what about if he really needs the medicine to prevent damage from reflux? How do you tell how bad your baby’s reflux is? We appreciate your time in answering. Thank you so much!
Jul 16, 2012
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
Hi and congrats on Santiago!!! I havent been here in a few months but i was browsing and saw your post. A few things come to mind as i read it. No paticular order just questions and or suggestions i will mention. Have you taken a look at your diet to avoid some allergies being passed through the milk? my daughter slept in a car seat and swing till she was 3 try more upright sleeping position. He is so little so you could roll blankets to put on each side of him. You said he chokes while eating do his eyes water also? could be aspirating on feed. I didnt know what the bethanechol was looked it up not sure why baby is on it for reflux. is there another issue but the side effect are upset stomach. As for the prilosec it works for some but for a true refluxer i havent see much success. dont know how he is dosed but it needs to be given 1 hr before he eats for better results. one thing i will tell you from experience is to be patient and listen to your heart. I know you are first time parents but your intuition will help lead the way.
Jul 19, 2012
Sounds a LOT like my baby! He is now 4, but he has all those same symptoms. Always trust your gut with your child, don't let ANYONE!!! tell you different or get into your head, including husbands and doctors. If you feel like something is up, it probably is!
What the dr is doing all sounds famliar. And for us (you can check my profile for our history) the risk of the side-effects from the medicine is less than the damage that not putting the child on the meds can be. Untreated reflux can cause so many other issues: swallow dysfunction, eating issues, sleep issues, as well as respiratory and speech and weight-gain.... Something to think about. Babies are resilient! He won't remember any of the testing if you can get it done now, to take care of him and help him feel better. It's when they become older that you have to get a little tricky with them! haha Lots of trips to the toy store for our son! ha! :)
The only way to tell how bad the reflux is, is to do the scopes and probes... have they suggested a Barium Swallow Study? My son had one, as he was choking and coughing after drinking and sometimes eating. It was corrected after 2 years of thickened fluids and speech therapy. I hope you are seeing a GI you like, and if not, call your insurance and see if there are other pediatric GIs in your area.
Jul 20, 2012
Hey! thank you for your input. After almost two weeks of medicine Santiago has improved a little bit in what behavior matters... he seems happier, not fussing that much. The amounts of spitting up have diminish (instead of spiting up after every feeding now he doesn't spit up at all or maybe once during the day). that's all... fighting the breast is kinda the same and sleep hours the same. The study that the doctor recommended if he doesn't show changes is an upper GI, which is the one where the baby has to swallow barium. The problem with this is that Santiago is breastfeed exclusively and I strongly do not desire for him to take a bottle or be introduced to the bottle for the first time during this study. Also, they said that he is not supposed to eat 4 hours before the test!!! he eats every hour and a half to two hours!! that is impossible! he is fed on demand! so they said that two hours is fine... but we have to travel one hour to get there... but by the time they will be ready for the test I'm sure he will be screaming like crazy... Ohhh you guys!! is so difficult to take the decision!! I feel he is doing somewhat better but the change is not huge... or maybe my desire of him doing better is making us see that he is doing better! :(
Jul 24, 2012
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
The pH Impedance Probe is considered the gold standard for diagnosing GERD. The trouble with a barium swallow (aside from actually getting the barium in and keeping it there) is that it is a very small snapshot of what is happening. The pH Impedance Probe, on the other hand, is a 24 hour test which gives very clear information about the frequency of reflux episodes, where in the esophagus they are occurring (there's more than just spit up when it comes to reflux -- it can be causing issues way down low in the esophagus as well, never rising into the upper esophagus). I would speak to your baby's doctor and find out exactly why s/he is recommending the barium swallow instead of a pH Impedance probe.

My son had several pH probes, and he was breastfed on demand as well (and he nursed every 15-30 minutes). It seemed impossible to me that he would be able to go without nursing for the 4 hours they required -- but even when that turned into 8 hours (a long awful story), he didn't completely melt down as I would have assumed he would.

Now, all that said, I have a slightly different perspective on invasive testing than most. My son has PTSD as s result of medical trauma (stemming not just from reflux testing -- he has a more complicated history than that) and I wish I had known from the start that that was even possible. He probably still would have gone through most of what he went through in terms of testing and interventions (some of it saved his life), but I would have had a different understanding of how to support him through it and what to look for in his responses to his medical procedures. Trying to decided what is best for our children in these circumstances is so complex, and so incredibly difficult. Educate yourself, trust your intuition and observations, and know that sometimes there just isn't a single "right" path -- just the one that we take with the most discernment and the best judgement we have. Keep asking questions here, and of your child's doctor, and know that because you are breastfeeding on demand you are not only already giving your LO a great gift, you are in a unique position to observe him as no one else can. Trust yourself.

Jul 25, 2012
How do you comfort your baby during testing?
Okay... thank you guys!! So... since Santi is gonna have to have some kind of testing and you have so much experience on this... how do you comfort him? specially when he is hungry and you cannot feed him? I use the breast as a comfort measure too... so during waiting time and during the actual test.. what do you do?
Check with your
doctor first!