Posted By Posting
Aug 16, 2009
mugwort
Courey, mom to Linden (Mitochondrial Disease) and Aniyah.
stomach drainage
My son is 2 yrs 8 month, he has Mitochondrial disease. Right now he gets J feeds 24 hours a day (he drops his sugar really really low if we take any time off the pump). His G port is hooked up to a farrell bag to drain all about about 4 hours a day. Right now he's putting out about 600-800 mls of drainage. His GI increased his prevacid to 45 mg a day (15 am, 30 pm). It doesn't seem to have affected the amount of output, but it does look a lot healthier as far as stomach goop goes. So I have two questions, 1. How much is a normal amount of stomach drainage? 2. Is prevacid supposed to decrease that amount or just make it less acidic? Thanks!
Aug 16, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Well, I think the drainage amounts vary depending on the child (and input) but that sounds like a lot of drainage to me. Hopefully one of the other moms can chime in and let you know what their children experienced. Your GI should also be able tell you how much is normal for your son and when to begin to worry about things like dehydration. Have they asked you to keep track of the drainage by writing down the amount. If not, you may want to start jotting it down.

Prevacid works on the acid content not on stomach motility. That's great that things look healthier so far. :) How long has he been on the prevacid? My daughter uses Prevacid too and we have noticed that it does constipate her somewhat. Obviously constipation doesn't help anything! We had to add Miralax to keep things moving. The constipation itself would make her throw-up or reflux.
Aug 16, 2009
mugwort
Courey, mom to Linden (Mitochondrial Disease) and Aniyah.
he's been on prevacid since he was 4 months old. We just upped his dose a couple of weeks ago to 45 mg/day. well this afternoon his bile started turning green. No more pretty yellow. Usually this means he has a pseudo obstruction, but nothing else seems to be bothering him. He's only complained of his stomach hurting once today. We're up to 725 ml now (we count from 6PM to 6 PM). So only 45 minutes till we reset the count. We're supposed use pedialyte to replace at least half of what he's putting out. So, for instance, today we should replace a bit less than 400 ml. The only problem is that we haven't worked up to that rate yet. We're going to run some labs tomorrow to check his electrolytes and make sure they're not terribly out of whack. If they are we'll just run some d10 and fluids.
Aug 16, 2009
mugwort
Courey, mom to Linden (Mitochondrial Disease) and Aniyah.
oh and as far as constipation goes I have no idea if that's contributing. He's been enema dependent for 9 months or more now. He has very poor motility in his colon. We had a KUB to check that out on friday and I'm going to call on monday and see if it showed anything.
Aug 16, 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 be very very careful managing that amount of bile output without going in to be seen. It's a fine line you walk. It sounds like you are able to get some of the fluids back in though. Just please be careful. Most of the kids I know on line, when they have out put like that they rush to the ER and don't wait.

Like you said, with output like that, there is normally a blockage somewhere along the GI tract and they need to find it or figure out what else is going on.

Where are you located.....are you in the U.S. and have you seen a GI motility specialist yet???

Also, if you are having that kind of output would it hurt to run the pump 27/7??? You can run pedialyte during the "off" hours so you can make up even more of the dehydration from the bile output...KWIM.

IDK, it's kinda JMHO but I'd be headed somewhere to get seen, even if you think you are managing the output well. It can just be soo difficult to keep track of and motility can slow way down at night, so since it's getting late, out put might go UP.

I guess it all depends on how often and how comfortable you are with dealing with it at home. I know we deal with pretty high fevers at home in the past that would make others swoon if they knew....LOL It's all relative to what you are used to managing from past experience. KWIM.

Aug 17, 2009
mugwort
Courey, mom to Linden (Mitochondrial Disease) and Aniyah.
yes, we're in the US and yes we see a GI. He has CIPO (chronic intestinal pseudo obstruction) so it's not totally new. We've just never hit this high of output before. We go in weekly for labs to make sure nothing is whacked out. Anytime we've ever gone to the ER for it, they just say "oh, he must have a pseudo obstruction, there's nothing we can do about it." and send us home. Unless he's writhing in pain and looking horrible, they just let us go. And it's a 3 hour trip there that I don't want to make if they're not going to do anything. He doesn't have any time off the pump as it is, so we can't make up during off times, but we are trying to work up his rate so that we can replace more.
Aug 17, 2009
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
http://www.lulu.com/content/4999931
Blog: www.healthcentral.com/acid-reflux/c/96
Hello Courey, I would like to link you with a mom dealing with mito/reflux/j tube, etc. with her sweet little boy. Contact me at refluxmom@gmail.com if you are interested. Jan Gambino The Reflux Mom www.refluxmom.com
Aug 17, 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
((HUGS)) I know how hard it can be to work up on rates. We could never get Jedd above 37ish CCs and hour on his night feeds no matter how hard we tried. It stinks. We could do 40ccs an hour with the NG but when he got his G, we just couldn't make it back to that fast. We have pulled his G now and he is all oral though.

Have you tried to go out of states to see a motility specialist to see if they can help with the CIPO better than the hosp. you are going to now???

I'm sorry you live so far away from the one you go to now. I get spoiled because we are about 30 mins (with heavy traffic) from ours. In a pinch I can speed and get there in 20...LOL

Aug 17, 2009
mugwort
Courey, mom to Linden (Mitochondrial Disease) and Aniyah.
GI nurse just called back. She said his KUB on friday showed an unusually high volume of hard stool in all parts of his colon. He's also pseudo obstructing. Hopefully if we can get both those issues resolved his output will decrease.
Check with your
doctor first!