Posted By Posting
Nov 08, 2010
jlh9s
Would love feedback
We have an 2 month old infant who has GERD. She was diagnosed at around 1-2 weeks, and until she was put on medication, she was losing weight and we could not even get her to gain back her birth weight. She was put on .25 ml of Pepcid and after 5 days, we could tell a difference. For the next three weeks, she gained tremendously and did much better, although we still had plenty of spit-ups, crying, and periods when she would reflux and could not eat. After three weeks on the Pepcid, it seemed to lose its effectiveness. Getting a new bottle (in case suspension had gone bad) did not seem to help. We put her on Prevacid for the past two weeks but so far, have not been able to tell any difference. If anything, it seems to be worse. We are going to give it another week, because the first week, we were using a pharmacy compounded suspension and the past week, we have only been using the Reflux Solutions version that we've been doing ourselves. We've been using the MARCI recommended dosage, so I don't think it's a dosage issue. She has some good periods but a lot of bad periods. It's frightening to think this will get worse and peak at 4-5 months. When it's bad, she will go 10 hours without eating and scream for 8 or more hours. I have cut dairy out completely and have experimented with the others but not seen any sign that there is a difference. She is breastfed, no bottles, and I have never consumed chocolate, caffeine, alcohol, etc. since she started BF'ing and I don't do any citrus now either. I had some questions and would love to hear back from anyone going through this or who has been through this! 1. How on earth do you keep the medicine down? We are giving her the Prevacid twice a day and Pepcid twice. We would do Prevacid 3 times a day but can't because of the Pepcid timing. Right now without the Pepcid, she wouldn't be able to eat at all and I thought we could do 3x Pepcid once it kicked in, but so far it's not showing any signs of doing so. During those four times a day, I at my wit's end for how to get her to keep it down. We hold her 22+ hours a day to make sure she stays vertical and her changing table has a wedge, her cradle is at a 45 degree incline, etc. But when she eats, she often spits up and whenever her diaper is changed, she spits up if it's done within 2 hours of a feeding. How do you parents get them not to spit up their meds? And if they do, do you re-administer them or what do you do? 2. How long did it take for you to see a difference on Prevacid or other PPI, and how could you tell/what did you see that made it obvious that the medication was working? 3. At what point would you try a different PPI? 4. Have any of you also had problems with spitting up more/refluxing more when on the changing table? I don't understand why as we have not only the Pollywog wedge under her changing pad, but an extra book to make the angle even more extreme. We roll her to the side as much as possible rather than lifting her bottom up, but like clockwork, the diaper change means a spit up. We go as long as we can between changes, but it's not possible with BMs. 5. Did you notice more gassiness with the PPI? Did things seem worse the first week or two on the PPI before they got better? 6. How much worse should we expect this to get from 2 months to 4 months? Does it then plateau until it starts to get better (hopefully 6 months but realize it could be longer)? 7. Anything else you've tried that helped that we haven't? We have tried a chiropractor (no difference), are going to try craniosacral, have tried gripe water, mylicon, Mylanta, etc. I am hunting down some probiotic drops now. 8. What are our chances of having reflux with a second baby? Thanks SO much for all your help. I don't know anyone else with this so it's a bit isolating. When I tell people she has reflux, I think they hear "spitting up" and think it's no big deal or that I shouldn't be medicating. If I wasn't, though, I don't think she would eat at all because she starts screaming in pain when it gets close to her Pepcid dose and until around 1.5 hours after, it's almost impossible to feed her. If we were doing nothing, I think she would be stick and bones.
Nov 08, 2010
jlh9s
Sorry, going to make this easier to read with paragraph breaks
We have an 2 month old infant who has GERD. She was diagnosed at around 1-2 weeks, and until she was put on medication, she was losing weight and we could not even get her to gain back her birth weight. She was put on .25 ml of Pepcid and after 5 days, we could tell a difference. For the next three weeks, she gained tremendously and did much better, although we still had plenty of spit-ups, crying, and periods when she would reflux and could not eat.

After three weeks on the Pepcid, it seemed to lose its effectiveness. Getting a new bottle (in case suspension had gone bad) did not seem to help. We put her on Prevacid for the past two weeks but so far, have not been able to tell any difference. If anything, it seems to be worse. We are going to give it another week, because the first week, we were using a pharmacy compounded suspension and the past week, we have only been using the Reflux Solutions version that we've been doing ourselves. We've been using the MARCI recommended dosage, so I don't think it's a dosage issue.

She has some good periods but a lot of bad periods. It's frightening to think this will get worse and peak at 4-5 months. When it's bad, she will go 10 hours without eating and scream for 8 or more hours. I have cut dairy out completely and have experimented with the others but not seen any sign that there is a difference. She is breastfed, no bottles, and I have never consumed chocolate, caffeine, alcohol, etc. since she started BF'ing and I don't do any citrus now either.

I had some questions and would love to hear back from anyone going through this or who has been through this!

1. How on earth do you keep the medicine down? We are giving her the Prevacid twice a day and Pepcid twice. We would do Prevacid 3 times a day but can't because of the Pepcid timing. Right now without the Pepcid, she wouldn't be able to eat at all and I thought we could do 3x Pepcid once it kicked in, but so far it's not showing any signs of doing so. During those four times a day, I at my wit's end for how to get her to keep it down. We hold her 22+ hours a day to make sure she stays vertical and her changing table has a wedge, her cradle is at a 45 degree incline, etc. But when she eats, she often spits up and whenever her diaper is changed, she spits up if it's done within 2 hours of a feeding. How do you parents get them not to spit up their meds? And if they do, do you re-administer them or what do you do?

2. How long did it take for you to see a difference on Prevacid or other PPI, and how could you tell/what did you see that made it obvious that the medication was working?

3. At what point would you try a different PPI?

4. Have any of you also had problems with spitting up more/refluxing more when on the changing table? I don't understand why as we have not only the Pollywog wedge under her changing pad, but an extra book to make the angle even more extreme. We roll her to the side as much as possible rather than lifting her bottom up, but like clockwork, the diaper change means a spit up. We go as long as we can between changes, but it's not possible with BMs.

5. Did you notice more gassiness with the PPI? Did things seem worse the first week or two on the PPI before they got better?

6. How much worse should we expect this to get from 2 months to 4 months? Does it then plateau until it starts to get better (hopefully 6 months but realize it could be longer)?

7. Anything else you've tried that helped that we haven't? We have tried a chiropractor (no difference), are going to try craniosacral, have tried gripe water, mylicon, Mylanta, etc. I am hunting down some probiotic drops now.

8. What are our chances of having reflux with a second baby?

Thanks SO much for all your help. I don't know anyone else with this so it's a bit isolating. When I tell people she has reflux, I think they hear "spitting up" and think it's no big deal or that I shouldn't be medicating. If I wasn't, though, I don't think she would eat at all because she starts screaming in pain when it gets close to her Pepcid dose and until around 1.5 hours after, it's almost impossible to feed her. If we were doing nothing, I think she would be stick and bones.

Nov 08, 2010
dcd
Hello. I'm so sorry to read your post and hear you are having such a hard time. You are not alone! It sounds like you are doing everything you can to help your little girl. It sounds like you are doing your research and being a good parent. I just wanted to say that.

I can't speak to many of your questions, but I can share a couple of things. #5 - I did notice more gas when we put our daughter on the Prevacid w/Buffer Babies. The gassiness got better after a week or two. #7 - Have you had any testing done at the pediatric GI? I put off the endoscopy for a long time because I couldn't bear the thought of subjecting my daughter to any "invasive" testing. When we finally bit the bullet and did it, I saw that I shouldn't have put it off. The procedure was so quick and relatively easy compared to the answers and peace of mind it provided. I'm sure the same could be said about other tests. Also, just throwing this out there - I'm not sure what the liklihood is that this could also be a factor in your daughter's case - but my little girl is allergic to both milk and corn. She never improved on breastmilk or any over-the-counter formula. She still reacted to the corn in soy, and Alimentum (both forms) and Nutramigen were not broken down enough for her. Ultimately she needed Neocate, which has made all the difference. I know it will be hard, but you may have to consider an even stricter elimination diet just to make sure she isn't reacting to something other than dairy in your milk. :( Make sure too that you check every single label carefully. We have learned this along the way... when I didn't read the ingredients of the teething tablets close enough, and the last one was milk. She spit up/threw up all afternoon. When I realized after a week of administering it around the clock for an ear infection that the GRAPE flavored Tylenol contains corn syrup (but not the cherry, go figure) - etc. I know you don't even know that your daughter HAS allergies for sure, but if you are trying to narrow things down, it is one place to start.

I hope the more experienced GERD mamas can give you some better insight and advice. Know that you are not alone in the reactions you're getting. Outsiders have no idea. I can't tell you how many times people have minimized Kylie's issues to "just spitting up", i.e. "all babies spit up." And I too got the barely concealed judgments about medicating. It's hard when no one understands, but you have come to the right place because people here do. I hope your little girl starts feeling better soon. Good luck.

Nov 09, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Give the Prevacid with Caracream at least 2 weeks before you expect to see anything. Yes, you will see more gas has her body gets use to have a decrease in her acid production. Its figuring out how to digest with decreased acid production. It will figure it out though. If it is going to work you will see a notable difference in her screaming, not maybe not in the spitting. PPIs just remove the acid, not tighten up the flap. I did see a lot less of the silent reflux with Ryan though because it took away the sensitivity in his stomach.

Remember that you dont have to give the PPI with Caracream with a feeding. Since she is such a heavy spitter I would give it to her with out a feeding. A good 20 minutes before you fill her up so her body has time to absorb it before she has a chance to spit up. In a few days you are going to need to start back down on the Pepcid

Diaper changing... always change before a feeding when at all possible.

I am not a big fan of gripe water for our refluxers. Most have not had good luck with it. Some have, but most have not.

Buckle up, this is a roller coaster ride and more importantly understand that this is a marathon not a race. Slow and steady wins the race. Only change one thing at a time and give each thing time to work. I know that is really really hard. You want it fixed right now and you want a fat happy normal baby that you can feed anywhere like everyone else. Trust me.. I know. That is not in the cards for you right now. Give it time though and you will get there.

You are doing a great job. You have educated yourself and are doing all the right things. Trust in yourself and keep plugging away.

How bad will things be at 2 to 4 months.. no one can tell you that. You might have it figured out by then and be on easy street. You never know. At any rate there is no use worrying about that or subsequent babies having reflux. You dont have any control over either situation.

Finally, ignore those that have no idea what you are going through. They dont get it, nor can they. You have to be living it to understand. Hang in there mama! We are there with you!!

Nov 09, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Give the Prevacid with Caracream at least 2 weeks before you expect to see anything. Yes, you will see more gas has her body gets use to have a decrease in her acid production. Its figuring out how to digest with decreased acid production. It will figure it out though. If it is going to work you will see a notable difference in her screaming, not maybe not in the spitting. PPIs just remove the acid, not tighten up the flap. I did see a lot less of the silent reflux with Ryan though because it took away the sensitivity in his stomach.

Remember that you dont have to give the PPI with Caracream with a feeding. Since she is such a heavy spitter I would give it to her with out a feeding. A good 20 minutes before you fill her up so her body has time to absorb it before she has a chance to spit up. In a few days you are going to need to start back down on the Pepcid

Diaper changing... always change before a feeding when at all possible.

I am not a big fan of gripe water for our refluxers. Most have not had good luck with it. Some have, but most have not.

Buckle up, this is a roller coaster ride and more importantly understand that this is a marathon not a race. Slow and steady wins the race. Only change one thing at a time and give each thing time to work. I know that is really really hard. You want it fixed right now and you want a fat happy normal baby that you can feed anywhere like everyone else. Trust me.. I know. That is not in the cards for you right now. Give it time though and you will get there.

You are doing a great job. You have educated yourself and are doing all the right things. Trust in yourself and keep plugging away.

How bad will things be at 2 to 4 months.. no one can tell you that. You might have it figured out by then and be on easy street. You never know. At any rate there is no use worrying about that or subsequent babies having reflux. You dont have any control over either situation.

Finally, ignore those that have no idea what you are going through. They dont get it, nor can they. You have to be living it to understand. Hang in there mama! We are there with you!!

Nov 10, 2010
jlh9s
Thank you SO much, dcd and vigilantmom! Gosh, it is nice to hear feedback, I can't tell you, since I don't know anyone with this and the pediatrician does not seem to know much at all about it (originally told me she'd be over it at 2 months most likely). It could be that the Buffer Babies is finally working. We were using suspension Prevacid for one week and just started the BB a week and a half ago. Yesterday was better than normal and today was the best day for the past 4 weeks. She actually nursed for comfort this evening which is amazing. Usually she nurses out of hunger or recoils from the nipple because she is used to associating it with reflux. I realize that there will be ups and downs and that tomorrow may be tough, but I am so happy to have had at least one good day! We did a craniosacral appointment on Monday morning. I have also cut all soy, corn, dairy. And the Buffer Babies might be finally kicking in. I don't know what combination of things it could be, but I am thrilled that something may be working! vigilantmom, when you were talking about cutting back on the Pepcid, how did you know when to do that and how much to cut back? Today was the first day that she did not seem to be dependent on it at night (usually she starts crying and refluxing in pain an hour before we are scheduled to give her a Pepcid dose). And thank you again so much VM and dcd! Thank you for taking the time out to provide words of encouragement and advice.
Nov 11, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I am sooo glad to hear you had a good day!!!!! You needed that. As far as when to cut out the Pepcid and do the Caracream mixure only, let your past expiriences and new behaviors be your guide. Once you have the caracream in her for 2 full weeks then consider cutting out one of the doses of Pepcid. See how she does for a week. If she is doing well then cut the 2nd one out. Whether or not you go to 3 doses of Caracream a day will be up to you and how she is doing. Some just do twice a day (Breakfast and Dinner), others will do the 3 times and others just once. It will all depend on how fast her body metabolizes it... You will know and can react accordingly. Ryan fell into the twice a day group. Just last week I dropped him to once a day. I am checking to see if he is ready to come off it. I have my fingers crossed.
Nov 12, 2010
jlh9s
Thanks again, VM.

I am excited to report that we seem to have turned a corner. Starting right after I originated this post, she has been doing great - like night and day from how she was before.

I am eternally grateful to the Buffer Babies folks since it was exactly 10 days on that and we saw results. We had previously done time on the suspension Prevacid from our local compounding pharmacy, and I was suspicious when I called and they weren't able to tell me what % of sodium bicarbonate they were compounding with. That suspension of Prevacid did not have any impact at all.

The only major spit ups we've had the past couple of days have been right after we've given her probiotics. So I think we're going to drop those. And I'm going to continue with no dairy/soy since I think that may be helping (and if not, well, the inability to have any processed food is forcing me to eat healthier).

I am so happy. I'm sure we'll still have ups and downs, but this is like a different world. I hope it gives some encouragement to others waiting for meds to kick in - I would go immediately next time to Buffer Babies rather than using compounded suspensions of PPIs.
Nov 13, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Whoo Hoo!!!!! Congratulations!!!!
Nov 15, 2010
dcd
Yay, that's great!
Check with your
doctor first!