anyone deal with really bad reflux?
BostonLove11
member
We started my son on Prevacid right before he left NICU. For six glorious weeks when we got him home we didn't even think he had reflux any longer and ate large quantities like a champ. Then we had to increase his iron due to anemia and bam- it came back almost overnight. Not sure if it was coincidence or cause or a little of both. For over a month now eating has been such a struggle. He doesn't spit up much, but as the day goes on the quantity of milk he can take at one sitting gets smaller and smaller until he will only take an ounce at a time in late afternoon/evening so we are literally feeding him every hour. His overall consumption has dropped so the pedi keeps increasing his calories/ounce so his weight doesn't drop. We finally have appts. with two GI specialists this week. But to be honest I'm not optimistic because if he is already on Prevacid, what else can they do? He is such a happy boy when he is not eating, it breaks my heart that eating is painful for him. And I'm terrified that daycare is not going to be able to handle his feedings when I have to go back to work next month:( Sorry so long...just wondering if anyone has any insight. Thanks.
Re: anyone deal with really bad reflux?
I'm not sure if I'm who you'd want to hear from as we are an extremely severe case, but I wanted to give you a hug at least..
My son was born with a stomach issue (not preemie related) on top of being a micro. Our first year was pretty much hell.
There are options beyond prevacid (Robbie is on Nexium now) and you can try a probiotic, and some diet changes as well.
For us, the damage was done and eventually Robbie required a g-tube, but that is a very extreme measure not done. Usually you can get on top of it and get through the rough spot. I hope you guys are able to get some good GI help. ((HUG))
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DD was on Zantac in the NICU though my suggestions that her reflux might be a milk sensitivity went unheard. As soon as she came home, I switched her from NeoSure to Nutramigin, fed her less more often and changed to Ventaire bottles. The combination of those three things worked wonders for us - the projectile vomit was gone within a few weeks.
We let her wean off the meds herself (she got bigger but the dose remained the same) and we stopped them completely at about six months actual (she'd been home for 2 1/2 months at that point).
With all that said, we're having some sleep issues right now and I think it might be due in part to some silent reflux. So we're back on a low dose of the meds to see if it makes a difference.
My son has had severe reflux sense birth and was put on zantac about a week after his birth, It didn't help so the increased the dose and started putting thick it in his formula once he was finally bottle feeding.
When I brought him home he was switched from zantac to prevacid. That worked for maybe a month, Then his pedi recommended putting actual cereal in his bottles. This helped for about a week. After that the pedi increased the prevacid to 30mgs a day 3 baby food feeds a day on top of cereal in his bottles. This appears to be helping for a time but he has started spitting up and having issues with acid hours after eating. It gets so bad I have to remind him that he has to breath through it.
I heard of a medication called axid from one of the ladies I became friends with at the NICU and am going to ask his pedi about this when I make him realize that my LO needs to see a GI. I thinking about just going to another doctor to get the recommendation. Anyways good luck. They maybe able to figure out whats going on.
I too saw your post and really wanted to send out a hug. It's such a painful situation to be in to want your child to thrive and eat so badly and to watch all of it get more and more difficult and become a battle.
There are definitely other things that can be tried for reflux, and other things that the GI doc might want to rule out as a cause. Evan, ended up with a g-tube as well. In the end time and diet changes were what helped Evan the most. Every kid is so unique with what works for them. I think heading in the direction of a GI doc is a good idea at this point.
Does upping the calories seem to affect things at all? Many times when we tried adding calories to reduce Evan's volume, it just = more puking, and less volume overall. So we were almost always better off going lower cal with fewer pukes and higher volume. Most of the time I felt like we were tight rope walking trying to get as much calories/food in with the least amount of pukes.
I hope and pray you find some answers and things get better for you and LO soon.
My 32w twins both had reflux. DS was the vomit/spit up king, but rarely cried. DD would drink, burp, scream/cry and refuse to drink anymore. They had to go to a pedi GI dr because our reg dr wasn't comfortable prescribing the amount of meds they needed. They were on both zantac and prevcid. DS got 1 tsp of rice per ounce of formula. DD got 2 tsp of rice in her entire bottle. DD got off meds @ 13.5 mo old and DS was off meds @ 15.5 mo. It sucks to go through for both you and DC. I hope you both find some relief soon!