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Keep us updated, hope it turns out to be nothing!!!

Thanks for the help and support, everyone. It looks like we'll be staying tube free for now. The NG tube won't be an option because of DD's reflux and esophagitis. GI doc doesn't want to jump to a j tube or anything just yet, because of the additional inflammation it can cause. So lots of...

I'm not sure. I put a call in to the doctor this morning. So I'll update when I hear something back. Just waiting right now! Thanks for the replies :)

Thanks penguin, I was lookng for something like this last night on google!

I couldn't imagine placing an ng for dd every day, or for myself. Clash and Tess, your sons are both amazing. I had an NG for bowel rest after an ilius I got after the c-section for DD. Had it two days and it was MISERABLE. Felt like I was constantly gagging, was very painful to swallow...

Thank you both. I don't know which would be better,the NG route or a J-tube or other. Something to discuss with GI, I suppose. She has really bad reflux, esophagitis, and short bowel syndrome also. It's a miracle we've come this far without needing any sort of tube feeding, but I'm so broken...

I got my second opinion from another GI re: DD Wednesday. One thing she changed was that she upped her Pediasure Peptide to 4 bottles, from 2 a day. Mentioned something about doing it via a tube through her nose, but DD said she would drink it. We left it at that; DD is 4 years old btw. Weds...

Thanks, Farmwife! I'll check out the other group too :) Foxheart - that is honestly something I hadn't considered at all...something to look into definitely, thank you! I grew up in Hampton, btw; moved to FL about 8 years ago tho!

Thanks to all the replies. Shortly after I posted this, a bad virus went through our household (DS picked it up from his father's house). DD had to be hospitalized for four nights because of dehydration and she just couldn't recover like the rest of us - I'm sure THAT sounds familiar. While...

Jennifer - her feeding therapist suggested making smoothies with it. Tomorrow I'm going to add some frozen strawberries and blend that up. And buy some bananas for the next one (we're out right now!). Hopefully the fresh fruits don't mess her system up too badly if I go that route. But if it...

crohnsinct - they did test her for cdiff, I think two different times even. I know she was on contact precautions for a while until the results came back negative. Thanks for the link to the information re: b12 and the Methylmalonic Acid. I'd read something about that - must have been a year...

She's NEVER had a B12 injection or any other form of supplementation for it. They always say her levels come back fine... she's 4 now and I find that so hard to believe. It was tested last year sometime...I'll have to call the office and find out exactly when. Also...I was just reading...

xmdmom - Yes these symptoms started after surgery. She hasn't been the same since it. Before surgery she was very active and energetic, and happy! Days before her admission even. She was admitted because a flare got out of hand - the diarhea, high fever, then vomiting led to dehydration and...

Thanks, that helps too. I don't want to offend or step on anyone's toes...the doc seeing her now is supposed to be one of the best in the area, but I'm not sure how current he stays with the studies. The inpatient GI who saw DD in hospital is in his same practice, but she's younger and was...

Thanks, Mehita. She's since been close to having a few flares, but nothing that required hospitalization. Penguin - I was reading the same thing, that they were both ineffective solo but in conjunction with Remicade had some effectiveness. I guess I'm just wondering... why NOTHING...

Hi, I'm new here. Just looking for some advice and opinions, I'm not quite comfortable with the care my daughter is receiving. I'll try to condense this, if any questions please ask. She's 4 years old. Was born at 27 weeks gestation, developed NEC, had surgery to remove over half her...