Posted By Posting
Jul 10, 2009
mommy2k
Kody's test results
Kody had his ges done last Wed and we called finally yesterday to get the results. He only empties his stomach 31% in one hour. That's not good. I need to know more information out about this. So it definitely means that he has delayed gastric emptying but he's not a puker.

I was just about to say that our gi is calling today and they just did. They're putting him on erythromycin and they're putting him on the highest dose of prilosec. We were told if it starts cramping his stomach again then call them back. They said that the milk protein in it shouldn't affect him but I don't know. He seems to be less sensitive with stomach stuff though so he may be starting to outgrow his mpi. I haven't risked it but I know that I have accidently probably have had milk protein in somethings with parties we've gone too and he didn't show any worse signs.

Could someone give some input on dge and let me know if they outgrow and how long it took? I know about lower motility things but not the upper ones.

I'm just praying that Kody starts getting some relief from these changes. His prilosec compound is not working for him because the bottle expires tomorrow. But it stopped working a few days ago so it's not been a very good week for him. He's not eating very well again and not sleeping and fussy and all those other lovely things. So now we're going to get it compounded at the children's hospital instead and hopefully it won't do this again for us. But it definitely works very well for him if we could just make it last the entire month for him.

Hopefully we're on the road to the right combo of meds and diet to help him be happy. I want those days to be more and more for him rather than the bad days outnumbering the good. It's amazing how happy and how much he does when he's not in pain. He's backslided on his milestones now because of all the problems we've had the last month. He won't roll over anymore and he just sits there. But I know he'll eventually get there it's just sad because we can't put him on his back and he hates his stomach. Oh well one step at a time right? Thanks everyone!

Jul 10, 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
Any chance the pharmacy will only compound 2 weeks worth at a time instead of an entire month??
Jul 10, 2009
mommy2k
vigilantmom-I'll have to look into that although I don't know how insurance would work. I have a feeling that insurance won't cover it considering that they've been sticklers about getting it covered in the first place.
Jul 10, 2009
mommato3
Holden has DGE but he is a puker. At least you have some answers. I wish there were other meds out there for DGE other than EES or reglan but there isn't in the US. I was about to say the same thing as vigilant mom about every two weeks for Prilosec. Worth checking into. Hang in there. Good luck. When do you have your app. with the other GI?
Jul 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
Your other options is to ask for zegerid which is a more stable compounded form of Prilosec and you dont have to worry about timing it around food. You can also call Marci-kids and they will send you the stuff to compound your prilosec into a liquid form yourself. Then you only mix up about a weeks worth at at time. Marci-kids.com. I am doing that right now because my daycare keeps forgetting to not let Ryan eat anything after 3:30 and they give him a snack at 5...right before I get there. That totally screws up his evening prevacid dose. Now that I have my own compounded version from Marci I can just give him that and not worry that his stomach isnt totally empty. I still use the disolved solutab in the morning though. He likes the taste better.
Jul 14, 2009
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I'd go to a small "mom & pop" pharmacy and ask them to do the two weeks. Maybe they could bill it all at once and just keep record of when you get each batch. They need business so they'd prob work with you. I wish I could help with the dge but I can't :(
Check with your
doctor first!