Posted By Posting
Dec 11, 2009
jjsophie
In need of general advice/suggestions
I think the worst thing about have a child (or children) with reflux is the roller coaster aspect--getting your hopes up as soon as things start to look better, only to watch it all come crashing down again. My 4 month old just seems to be getting worse and worse. She's a pretty happy baby, but when she's refluxing she makes everyone around her miserable. Right now she has a cold and its teething, so you can imagine how great things are going for us. And things weren't great before those things started. She is taking 30 mg of Prevacid each day and 1/2 tsp of Zantac at bedtime, but she still wakes almost every our, sometimes remaining awake for 30 minutes a time. And once the reflux wakes her at 5 am she is rarely able to go back to sleep for more than a cat nap. She sleeps off and on all day to make up for her poor nightly routine. All this despite the fact that we keep her propped up at night. Gripe water has helped some, but not enough. Does anyone have any suggestions? I'd be willing to try almost anything, including alternative meds. What has worked for some of you out there, or helped? Please, please, we need sleep so badly. My 2-year-old needs his mommy back. :(
Dec 11, 2009
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
When do you administer the Prevacid? Have you thought about going 15 mg of Prevacid in the morning, Zantac at noon and 15 mg Prevacid at night. Perhaps the night time dosing of the Prevacid will help her make it through the night. I assume you are giving the prevacid on an empty stomach and feeding 30 minutes later?
Dec 11, 2009
jjsophie
I try to give her the meds 30 minutes prior to a feeding but her feeding schedule is sort of erratic. I am currently giving her 15 mg of Prevacid in the morning and 15 at dinnertime, and the 1/2 tsp of Zantac at bedtime. Her specialist says the Zantac tends to work best at night because it works better when there are fewer feedings, and with the Prevacid it is vice versa. At first the Zatac did seem to help a lot, but now of course nothing seems to help. We did try eliminating the Prevacid a few months ago, but that was pure hell. So you think maybe swapping the PM Prevacid and Zantac might help?
Dec 11, 2009
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
Its worth a try. She is on a heavy duty dose of meds for such a young one. Yet it sounds like she is getting very little relief which is very puzzling. I assume she is on the prevacid solutabs. Makes me wonder about a couple of things. 1. Would she do better on a different PPI like Nexium. I know a lot of docs say that all PPIs are the same but different kids respond differently to different PPIs . Some moms on the board have not had good luck with Prevacid but did very well on Nexium. Again, worth a try. The 2nd thing I am thinking about is I wonder if she has EE, eosinophilic esophagitis which is caused by an allergy. Has she been scoped yet? That is really the only way they can find out if that is what is causing her reflux and pain. Typically the first thing that will signal this to the GI is a poor response to a PPI. Has your GI talked to you about this possibility. Is she on a special formula like alimentum? Google EE and see if you think her symptoms match up.
Dec 12, 2009
lorenzomama
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.
We've had some success with craniosacral therapy and Chinese Medicine. Nothing miraculous, but sustained improvement in some areas -- especially pain. If you can find good practitioners, they are both pretty much can't-hurt-might-help options. Several people have recommended Homeopathy to us, as well, but we haven't tried that yet.

I agree with you -- the roller coaster is really horrible. It leaves me feeling utterly undone sometimes... ((HUGS))

Dec 12, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Hugs!! This sounds like my first born. Prevacid might not be right for her. It didn't work for either of my refluxers. We tried, zantac, prevacid, Prilosec and finally Nexium worked for both of them. My little guy was only 5 months old when he was put on Nexium and what a difference. Have you tried Maalox or mylanta? That worked well for my babes as well, esp. when they're really in pain. HTH
Dec 15, 2009
jjsophie
We tried Nexium but each day became worse and worse, far worse than with the Prevacid. Her specialist called her a non-responder. I called the specialist and they informed me that viruses make reflux much worse, so I'm wondering if that is why things have been so bad lately. My son brought home a cold and we've all been passing around to each other over and over again (will post on this in a new thread). I think she fought off a cold a few weeks ago, and then it came back and now it's a full-fledged coughing cold. I will probably definitely stick with the Prevacid and Zantac because when she is not taking them things are far worse (on a night without them I might get 3-4 hours of interrupted sleep, as opposed to 6). Her specialist did mention doing an upper endoscopy, but I don't even know what that is, and he wasn't keen on doing it. I guess he didn't think she needs it because she does have good days, one or twice each week. If things continue to get worse post-cold, I might be interested in this. Can someone educate me? I will google EE. I am breastfeeding her, and in the beginning I did an elimination diet. I went two weeks eating very little and discovered very little by doing it. Tomoatos and other acidic fruits bother her, but that's it.
Dec 15, 2009
jjsophie
Also I think the reason her specialist hesitates to do something different is because the Prevacid helped tremendously . . . at first. Then we added the Zantac, and that helped a lot. Then it started getting worse again so we increased the Prevacid, and again, that helped. But of course now things are getting bad again. The literature I have says that reflux peaks at 4 months. Is this true, does anyone know?
Dec 15, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I would ask that they do the scope and don't change anything in your diet until it gets done. If you change anything or eliminate things from your diet prior to the scope you can alter the results.

A scope is an easy procedure, it takes all of 15 mins and they are in and out. We barely had time to check into the waiting room and sit down and the GI came out.

Far as fast a test as it is, it gives a world of into. I'm surprised your GI won't do it now. Esp, given the pain she sounds like she is in.

Colds can most certainly affect reflux and can take more time than normal to bounce back from.

I would say that reflux for us peaked at 4 months and pretty much stayed there for a long time. Not to scare you, Jedd's a complicated kid with other medical issues that went on during that time frame that contributed to this.

Jan 09, 2010
georgiasmommy
Allison
Mommy to Georgia Kate 12/3/08
Where and how is your daughter sleeping? I know at 4 months things got really bad for us....The only place Georgia would sleep well and in longer stretches was with me. I know it's not ideal. BUT you may want to try it. I have a 5 yr old and if I don't get sleep, I get stressed, then anxious, then all I do is yell at my 5 yr old.....you are right, your 2 yr old needs YOU. A semi rested you. I feel your pain. I would usually prop Georgia on a pillow or even my arm.....and she would SLEEP. Now it is a roller coaster still. BUT....it's SOOOOO much better than before.
Check with your
doctor first!