Posted By Posting
Dec 08, 2009
How much pain is "normal" for refluxer?
Hi, Our daughter is on prilosec and zantac and just starting erythromycin. Despite the meds, she is still in a lot of pain. Last night she screamed off and on for 2.5 hours for example. Is it typical for a baby with reflux to be in this much pain even when they are medicated? I don't want to subject her to needless tests and procedures if this is as good as it's going to get, but this doesn't seem right to me. Thanks for any advice!
Dec 08, 2009
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
it takes the medicine some time to work.

Give it some time.... Katelyn was born on the 14 of november!

Our babies are close in age!

Dec 08, 2009
Thanks, Stickybean. I'm so sorry you have to go through this with 2 kids! We've been on this combo for a month. Things are much better, but nights are still horrible. Sadie cries for hours. Our GI specialist told us things would probably be like this for about a year, but it doesn't seem right to allow her to be in so much pain for that long. P.S. If Zack'smom reads this post, thank you so much for your encouraging note to my last post. I needed that!
Dec 08, 2009
Im not sure how old your baby is, but I do know that if you have been on these meds for a month and she is still screaming for hours on end that tbe meds are not working. I think everyone on this board have been there at one time or another and it is not fun. Johnnie has been on all the meds for reflux. I noticed that with the Zantac and Axid meds, he would scream for hours at a time, and he would scratch his face up so bad he would bleed. When I started doing some research I found a warning that said that Migraine headaches could be a side effect. He was hurting so bad he was pulling out his hair in clumps! As soon as we stopped using those meds, he was still hurting but not a screaming monster 24/7. I would call the dr and tell him you want something new. It is true that it takes a while on any medication before it will start working but you should be seeing a positive difference within a week and it should be getting better not worse. Whatever they prescribe make sure you know how it is supposed to be given. Timing was a big deal with us, and our dr's didnt always tell us so we had to find out through this board or by trial and error. Hang in there- it may not seem like you can do this but you can and it does get better.
Dec 08, 2009
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
How long has she been on Prilosec?
Dec 09, 2009
You all are the best! Thank you! Sadie's gotten better with everything we've tried, but it is still pretty unbearable. She cries at night, not all day now too although she is still pretty fussy during the day. I have to work constantly to keep her from crying. I couldn't take her out of the house or have company or anything. My GI specialist told us this is how it might be for a year or two years, but I think Sadie, my husband, and I might lose our minds if this keeps up much longer! I also wonder how Sadie could ever learn to crawl or walk if she feels so miserable all the time. Here's what we've tried (she's 13 weeks on Friday). Thanks for any ideas! • Zantac-.8ML twice a day. • Prevacid (solutabs)-half a tablet once a day. • 11/2-11/13 -- Prevacid-half a tablet once a day with .8ML Zantac at night. • 11/13 – present-- Prilosec-2ML once a day with .8ML Zantac at night. • 11/5 – 11/20 Eliminated milk and soy from my diet. • 11/20 - Stopped breastfeeding and started Ailmentum. • 11/24 -- Stopped Ailmentum and started Neocate. Began adding rice cereal. • 12/4 – Began Rithimicin.
Dec 11, 2009
Your daughter's symptoms sound exactly like my daughter's. She is now 4 months old and things have not gotten much better. She's had random good days, but the bad ones always return--fussy almost all day, screaming periods of and on all night. My two-year-old suffers the most, I think. My daughter is taking 30 mg of Prevacid during the day and 1/2 tsp of Zantac at bedtime. We keep her propped up all night (but this is going to become challenging given that she's starting to roll over). Like you, I am breastfeeding, and I've played around so much with my diet that I'm 95% certain that her symptoms are unrelated to what I eat. I don't think it's right for your specialist to say things will be this way for a year. My son's symptoms were similar to my daughter's (only not quite so severe), but from the time he was 6 months old things got better and better, and we were able to take him off his meds at one year. I would love for you to keep me posted of your efforts because I feel we are in the same boat. I've tried everything. Our specialist says that if I start getting too frantic he'll give her an upper endoscopy, but she's already had her stomach X-rayed, and on a separate occasion her esophagus X-rayed. :( And I'm not even sure what would be involved with that. Maybe I'll post on that later . . .
Dec 15, 2009
Hi JJsophie, just want to say I'll keep you posted. Our situation just got worse and we may need a feeding tube. I stopped breastfeeding and things did improve when we started using Neocate. I had tried an elimination diet, but I guess I didn't get everything. I hated to give up breastfeeding, but that is the only thing that has made a difference so far. That said, Sadie is still pretty miserable and I know we haven't reached the 4-6 month peak yet. Please keep posted on your progress too. I don't know how you are doing it with another child to care for. I'm so sorry!
Check with your
doctor first!