Posted By Posting
Jun 04, 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.
What to do now?
I feel so lost...not sure what to do. So, DD previously had been on prevacid and zantac. Has a strong feeding refusal at times, and poor sleep. Mostly lack of naps. Usually does one long stretch of sleep at night but then will take 1.5-2 hours to get her to eat and go back to sleep. Started a trial of zegerid and it's been a week. I know it hasn't been that long but I feel like I am at my wits end. I have given zegerid in the morning as I wanted to see if it would help her consistently feed. It is really hard to give her the zegerid, she is gagging and trying to puke. Then after the med, she will only BF like a minute and is done (even if she hasn't eaten for hours). I have to wait til she is sleepy to attempt to feed. She will be up all day (maybe a 5 minute sleep in my arms) til about 2 or 3 and then finally I can get her to nap 1-2 hours. Bedtime is a nightmare. She falls asleep easily but wakes up burping, spitting up, arching. UGHHH! I just don't know what to do. She is so miserable with the gas too.

Her zegerid dose is 10 mg and I use the 20 mg powder packs. I have kept up with her zantac in the evening but never really felt like that helped much. I use cherry mylanta here or there to see if that will help with sleep. We go for an upper gi on monday but can't get back into ped GI clinic til August. My pedi doesn't have any good recs but is willing to try changes as I suggest. She isn't comfortable increasing doses though. The lack of good sleep for me is killing me as I have an almost 4 year old too. Suggestions? Stick out with the zegerid or go back to prevacid?

Jun 07, 2011
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 strong believer in the 2 week rule. Give every change you make 2 weeks before you consider another change. If you are really struggling I would try 7 mg in the morning and 7 mg at night. Try that before you go back to the Prevacid.
Jun 07, 2011
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
ps. They can be super gassy the first 10 days on Zegrid. Their bodies are adjusting to the decreased amount of acid in their stomachs. Its normal and it will pass.
Jun 07, 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.
Thank you!

DD had an upper gi this week. The radiologist was concerned about the position her stomach is lying in. We are to follow up with the surgeons tomorrow. I am worried and scared. No idea what to expect. Hoping for some answers. I have stuck with the zegerid and zantac at night. Will see what surgeons say and try to get back into GI earlier than our appt in August.

Jun 08, 2011
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
Oh my. I am so sorry. I bet you are stressed. Will be thinking of you tomorrow. Let us know how it goes.
Jun 08, 2011
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
Oh my. I am so sorry. I bet you are stressed. Will be thinking of you tomorrow. Let us know how it goes.
Jun 08, 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.
We went to the surgery clinic today to follow up on her upper GI results. The UGI study showed that DD's stomach is folded up on itself. This may be why she is irritable and spitting up frequently. It maybe kinking at the pyloris and causing delayed gastric emptying. The surgeon recommends a procedure to fix the stomach down in a few points so that it is not too floppy. At the same time, they want the GI doctor to do an endoscopy and evaluate just for reflux issues. She will be hospitalized following the procedure which should be able to be done laproscopically. They aren't sure on scheduling yet since it takes coordinating two doctors for the case. The risk of not doing the surgery are that her stomach might kink or obstruct. We are to watch for her signs of this and take her to ER if this happens.

I am hoping to get in or at least talk to our GI doctor before the procedure. She hasn't been totally comfortable on the once a day zegerid and I am hoping he can up her meds while we wait for surgery.

We are understandably nervous, stressed and very sleep deprived. I hope we can get this surgery done soon and get our little girl happier and healthier.

we are also concerned for our other child who is 4 and also has reflux. He had an upper gi as a toddler but wonder if he has any anatomical defect causing his issues. He most likely has a repeat UGI and an endoscopy in his future.

thanks for all the info and help on this forum. Glad to know there are others that understand.

Check with your
doctor first!