Posted By Posting
Dec 31, 2011
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
Help...trying to wean PPI
I'd love some insight...I am trying to wean down my daughter's zegerid. She is 14 months old. Had stomach malrotation and surgery this past summer along with endoscopy. Anyway, she was on Marci Kids dosing and GI doctor thought she could decrease her dose to 2x/day versus 3 after a year old. I tried dropping her mid day dose for 4 days. 3 out of the 4 days she barely napped, woke up crying. This is very unlike her. She (now) sleeps well for naps and always wakes up bouncing in her crib and happy to play for a while. Today she woke up screaming. I went downstairs to get her zegerid (thinking forget this wean, she must be hurting) and she started crying out for the medicine when she saw it. She started reaching for it. I know she is super young but it made me think that she knew she was in pain. Anyway, sometimes I feel like I am going crazy over analyzing every little thing. She is so darn happy on the 8 mg of zegerid 3 times a day. I hate changing things.

My daughter just got over being sick twice each lasting 3 weeks. It was just colds but she would get so much mucous and then projectile puke up everything in her stomach at least once a day. She would just heave and heave. It just made me wonder if her spincter is not closed yet.

The GI doctor said we can try to wean completely this spring after cold/flu season. Should I just keep her on full dose of meds? Am I doing her any harm keeping her on such a high dose. Our surgery completely freaked out when he saw how much she was on. Our pedi is the one that originally ordered it. But she didn't start sleeping well til she was on the 3x/day dosing.

I have another refluxer and it has been a nightmare always trying to wean him. He is 4 and still on meds. Are kids easy to get off of meds? I know some friends have said they just forgot their kids doses for a few days and they were fine. Not our experience. Anyway, would you leave her on and not rock the boat at this age? She has one molar in and I know teething can make stuff worse. I've heard things get better when they walk but she isn't doing that yet either. Thanks in advance!

Jan 01, 2012
sebastian
Sebastian's parents. Baby stopped eating at 4 months.
Unfotuntately I don't know about the side effects of the medicine long term. I wonder about it as well since our son is on it. I remember one time on the Dr. Oz show they spoke about PPIs and he recommended for people to not be on them for long. Well, that's easy to say until you have a child in pain. When they did the endocsopy did they mention that her spincter was open? If not, here is just a thought .... have you tested her for allergies? Patch testing? Reason being from what I hear over and over endoscopies may not show allergies. The scratch testing may not show it either. But the patch test may show it. They may both be allergic to something very basic that they get exposed to, something like Gluten? Again, just a thought.
Jan 02, 2012
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
funny you mention the dr oz show. I saw one show of his that talked about heartburn and risk of esophageal cancer. If that is the case, I'd much prefer to have my child on medication. I don't know anything about the patch test for allergies. My 4 year old had the scratch test at a pediatric allergist around 18 months I want to say. He was negative for everything but had horrible GI symptoms with dairy and wheezing with soy, so he's been off of them. My toddler hasn't had dairy or soy (dont' plan on rocking the boat and trying in case she has issues...i was dairy intolerant as a baby and now as an adult I don't eat it). My toddler is so happy, good eater and sleeper now when she is on 3x/day zegerid.

When she had her endoscopy at 9-10 months old, it showed a floppy sphincter (Trying to remember the Gi doctor's exact words) but it wasn't closed. Basically the top part of her stomach was folded over, it wasn't attached properly during development and the stomach was refluxing back up into her esophagus. It's very rare (about one case a year they see). There was damage he showed me in pictures in the top part of her stomach.

We are going for my 4 year old's endoscopy in late Jan. I guess I can ask him about my daughter then too. I won't be worried if I coudl wean her down to a lower dose of zegerid. Initially, the GI doc had said if she wasn't off by 13 months, he would rescope her but last time I talked to him he was much more relaxed about it. Hum...

Jan 02, 2012
sebastian
Sebastian's parents. Baby stopped eating at 4 months.
Our son's scratch tests came all negative but the patch tests are showing positive. Like Bananas came negative on the scratch test but they are as bad as soy on the patch test. Hopefully you will only get good news when you do your 4 year old's endocsopy. I am not a doctor, I am just trying to give ideas, which I am sure you have already thought about all of them. What if you don't cut the 3rd dose completelt but go to half of it. Do you think that may work? If not, I would be scared to lower it.
Jan 02, 2012
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
These kids are smart. They figure out really quick what resolves their pain for them. My son would crawl to the fridge and pull at the door when he needed it his PPIs. I also have photos of him dragging the Malox bottle around with him like a security blanket. Sad and funny at the same time. 24 mg of Zegerid doesnt sound that high to me. I have seen it a whole lot higher. That said, if you would like to try to wean down, dont take the afternoon one away cold turkey. Instead, drop it by 1 mg for 2 weeks, then drop 1 mg from the morning dose for 2 weeks and then 1 mg from the night dose for 2 weeks and then sit at that level for a few months. Then start chipping away at it again. Baby steps... and document as you go... sleeping, eating, mood etc. You will need this if you get pushed to wean faster than your daughter is ready. I didnt get my son weaned till he was a little over 3. I did it 1 mg at a time and my pediatrician was totally supportive. There is no magic age for this. Let your daughter be your guide.

On your son I would take him back to a Ped Allergist now that he is over the age of 3. Allergy tests prior to 3 are sketchy at best. Get your testing from an allergist.. not the GI.

Jan 03, 2012
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
Thank you for the responses. I like the idea of a much slower wean. I hate how the doctors just push to drop the doses so quickly. Vigilantmom...I have read that you need to give a minimum of 7 mg dose of zegerid in order to have enough buffer. Is this true? If so, when I drop down to 7 mg for all 3 doses, how do I wean further? I really appreciate your help and advice.

I will consider the allergist again for my son after the endoscopy. I didn't think of this. thanks

Jan 03, 2012
sebastian
Sebastian's parents. Baby stopped eating at 4 months.
Good luck. I hope it all goes well. Let us know how the endoscopy goes.
Jan 04, 2012
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
You could tackle it a few ways. One way to do it is by adding more buffer with NOW brand calcium carbonate to your Zegerid or you if you are doing 7, 7, 7 you can change it to 9 in the morning and 9 at night and skip the afternoon. I know you havent had good luck skipping the afternoon one right now, but perhaps you needed to up the morning one to compenstate for that. One more way you could do it is to replace the afternoon dose with Zantac so 7, Zantac, 7 or even 9, Zantac, 9. Then work on lowering the morning an night doses. I hope all this makes sense. Go slow, document, adjust as needed. Childrens Tums are great for those early days of weaning. Your daughter is still young in the rhelm of GERD babies and she had other complications to boot. What is another 6 to 8 months in the grand scheme of her entire life time? You are doing great! Continue to follow your own instincts!
Jan 05, 2012
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
vigilantmom, thanks for the weaning advice. I will try one of these ways. Yes, I know having her on a few more months is not a big deal in the grand scheme. I'd rather go super slow with her. She's been through a lot. The docs just push but I know I can push back and do what is best for her. Journaling will be key too. thanks!

I will definitely update on my son's endoscopy and ph probe study. he is scheduled jan 20th. Today he asked to go to the doctor so they could figure out what is wrong with his tummy. he never asks to go to the doctor. This just broke my heart. We haven't told him he was going to the hospital for a procedure yet. Poor baby! Reflux is just no fun!

Jan 08, 2012
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
Vigilantmom...can you elaborate on how I could add more buffer to zegerid so I can drop down below a 7 mg dose. I saw the Now brand calcium carbonate on amazon. I am not familiar with it or dosing. How much would I need to add? I am just thinking of options instead of adding zantac. I am not anywhere near needing this yet but curious as I want to have a plan. thanks for all your help!
Check with your
doctor first!