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Okay, please forgive me if this has been answered a zillion times, but I am a little stumped.
Hunter is on 30 mg of Zegerid a day. We went on the Neocate trial about 3 weeks ago, and after only TWO, yes two bottles, he was a different child. So, everyday he has improved a little more, and now he is just as happy as he should be. Still spits up a little, but not more than a “normal” baby probably would.
Okay, so here’s the question. If we have determined that he does in fact have a MSPI, that is what was causing his severe reflux, right? So, do you continue with the meds? I don’t want to just take him off of them, I certainly don’t want to mess with a good thing. But, are they still neccesary? I should have asked the Dr to be more specific, but he seemed a little rushed, and I lost my train of thought. He said that Hunter should grow out of these intolerences/allergies by his 1st bday, so are meds needed until then? I am sorry, I guess I should call the office and ask. I just thought I would ask your opinions, you have been so helpful and gotten us to where we are today!
Take Care, Sherry
First, Yippee for a happy baby!
Hmmmm….Well, I’m sure a baby can have MSPI and not have reflux. But it’s also very common for them to have both.
How long has he been on Zegerid? Did his symptoms improve some while on Zegerid but before the Neocate?
Did he have any tests done that comfirmed reflux?
It’s very hard to determine these things and I bet the doctor won’t have a clear cut answer either.
I think the only way to know for sure is to stop the meds and see how he does. That’s probably what I would do, BUT only if I didn’t see much improvement in the first place with Zegerid and before Neocate. Does that make sense? Because it could be the combination of both factors (Zegerid and Neocate) which has turned things around.I’m glad he’s happy and I hope it continues!! Please let us know what you decide to do and how he responds.
He has been on Zegerid for about 6 weeks, and yes he was improving compared to the prevacid solutabs (looking back he was NOT on enough, though). I basically took the Marci print outs to the Dr and would not take no for an answer. Then we went to a new Ped GI (we just moved to Colorado from Texas), and he suggested Neocate since we had tried literally EVERY formula on the market. I guess it is the combo of both formula and meds, I’ll just leave well enough alone. I just hate that this poor baby has not been alive a day without being on medication. I need to just be thankful that he is feeling better.
As far as testing, we have had both the upper GI and two sonograms. He was negative for Pyloric Stenosis, but had extreme reflux with the barium (I’d probably reflux that junk up too!).
Thank you for your responses,oh yeah, my baby is 6 whole months old today!
Sherry
Considering his Upper GI results, I think your plan to keep him on meds for now makes sense.
I hope he continues to be happy
like all babies should be and deserve to be!Andrea,
I printed out everything from Marci-kids, and I highlighted what I could point out quickly. Luckily, our Ped had alot of experience with the subject– two kids with severe reflux (they had to have surgery). He actually reinforced the fact that you can’t really take “too much” of a PPI, and he wrote the script. The Ped GI doc asked us what med was working for us at the time, and wrote us another script, and switched us to Neocate because of a few MSPI symptoms. I did find that none of the nurses, at either office had heard of Zegerid, but the doc’s had. I don’t think it is a normal script for them though.
Looking back, I was probably kind of pushy, but after months of complete bedrest, weeks in the hospital with seizure high blood pressure, and then a preemie baby that screamed in pain non stop- I really wasn’t in the greatest mood.
Of course, we found really great docs, too.We really like Zegerid b/c o the timing issues. It’s hard enough on a good day to figure out what he needs, much less trying to put him off 15-30 minutes before a bottle. We mix his doses with 1 oz of formula, making sure he gets it all down, then we feed another bottle with the rest of the formula.
I hope it gets better, but I know how you feel, it is so scary when they can’t catch their breath. I hate that these babies have to go through so much when they just entered this world! It really makes me realize how lucky we were with our daughter in her first year. Good luck with your Zegerid quest. It really has been the best thing for Hunter.
Take Care,
Sherry
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