Posted By Posting
Aug 18, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
PH Probe
Z's gastro from UCLA JUST called me back again...he said he gave me incorrect info on Z's PH Probe. It was highly abnormal. He refluxed 200 something times in 24 hours, however it was largely non acidic. As Z is doing JUST as well off the Prevacid right now he wants us to stay off. he stressed that he thinks that Z is a surgical case...I'm so frustrated. He doesn't seem to see the improvement that I do. 3-4 months ago he was puking NON stop...now he MIGHT puke 3 times a week...that's improvement. I'm not shocked that he still isn't eating much..he's never eaten much and maybe it's not hurting much anymore, but he's so conditioned that way!! Ugh..anyway, he said he can see that I'm not "on board" with a surgery right now, so he wants me to call back with Z's height and weight at his 2 year appt, so he can compare it to one year. Ugh, I'm so annoyed....I KNEW he was refluxing...I'm glad it's not acidic, but I was thinking I was CRAZY!!!!!!!!!!
Aug 18, 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
Wow! That would be terribly frustrating. Questions for you... Was the PH probe done when he was on the Prevacid? If so, now that he is off the prevacid will it turn acidic on him which would warrent him going back on the Prevacid? On the opposite end, is it possible that the Prevacid was making him nauseous and now that he is not on it he isnt puking anymore?What is your gutt telling you?
Aug 18, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
my gut tells me that the Prevacid did help for a time, but that it's not doing anything anymore...he was off the prevacid for a week before the probe. His vomiting stopped ABRUPTLY following a virus...once he was over it his eating never bounced back, but the vomiting never did either. Getting 1000 cal in him a day is near impossible and i hide calories EVERYWHERE! He's now been off the Prev. for two weeks and he's exactly the same with or without it. Grrrr. I will definitely be "watching" for acid breath or acid puke and will put him on it immediately if that happens.
Aug 18, 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
Just keep a close eye on it. Sometimes those meds can linger in their system for a bit and that could be why there was non acidic reflux.

I would make a deal with the surgeon. Ask them for more time. We did, he was more than willing to do it. As long as Jedd was gaining on his curve, we were all willing to wait it out. And Jedd was tiny.

Asking to wait until he's two is a very reasonable request. Alot of kids just need time. And finding the surgeon and GI who are willing to give it is just priceless.

Aug 18, 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
Whoa! A 1000 calories a day would be really hard. I dont know how you do it. Ryan is eating really well and I dont think he is hitting that. When his weight was at the bottom of the chart a nutritionist have me high calorie recipes to use to get maximum calorie out of little quantity. I will send it to you. I made some of the recipies. I will admit though that a lot of the time I took the easy way out and just sprinkled DuoCal on and in stuff. It work really well and it was easy. It got us over the hump.
Aug 19, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Jessica - the guy was good about me not wanting to do surgery...my son is happy healthy is rarely sick (knock on wood)...he doesnt aspirate, has never had pnuemonia and has had no ear infections for well over a year...PLUS he has DGE and he's a gagger...to me and everything I've read he's NOT a great candidate...so I'm going to hide out and work on eating and see if we can just slowly make progress with that. I'll definitely be watching out for acid, though
Aug 19, 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
Slow and steady wins the race... :-)

Sounds like you have a great set of DRs.

Check with your
doctor first!