Noah had a fundo done on July 1st. On June 27, we had a DGE scan with solids that was normal. I worried because no one told me to not give him Reglan the night before and I worried we would get a false negative...that would stick around forever if he did have it.

I just knew Noah had this because we had been struggling with bowels since he was 6 months old. He would go from being constipated to having diahrrea...and so forth. It appeared that although the Reglan did nothing to help with reflux, there was a time when his stools were more regular on the Reglan/Erythromycin combo.

The doctor we see now is fabulous. My child is complicated and does not present with most things "typically".... he knows this. The only thing is this doctor picked us up when we went for a second opinion on the 27th of June...and has been with us every day since then...literally. We have to talk almost daily as he is about an hour away and Noah is still adjusting....My point is he doesn't have the early records of Noah's because I was in such a hurry to get to him and I worry that may be holding us back...so today I'm going to get those and send them...but that's beside the point.

Noah was doing great a couple of weeks ago. We had finally gone back to a completely solid (stage 2) babyfood diet. Noah had post-op swelling and swallowing problems that prevented him from eating normally post-op and was being primarily tube fed.

Well....2 weeks ago Noah started pulling his shirt up and opening his button pointing to his stomach and whining. We vented and got 115 ccs off his belly....it had been 4 hours since he had eaten...he had some sippy cups in that 4 hours...but still!

The next day was ok...then Monday, the next day, was bad again. We were pulling around half of his contents off 2 hours after a feed. We went back on the pump and still had problems with the formula sticking around. Finally after a week of this madness...and gradual constipation approaching....we had a KUB (he quit going even with suppositories). The KUB revealed severe impaction. Doc said he was considering a G-J tube if this had not been the case because of the emptying problems. He decided to wait. Noah has lost over 2.5 lbs in about 2 1/2 weeks! He looks terrible. I'm not so sure his wrap is in tact as yesterday I noticed it sounded like he was burping and then swallowing it....on Tuesday he wretched though and didn't ever throw up, which makes me think it is in tact.

As he has started going again...had about 5 bms since Tuesday....the residual is increasing again. It had gotten better for a day or two. We got 55 ccs of the 75 we fed him back off his stomach 2 hours later yesterday and that was partly because he still had 25 on his stomach before I fed him that. He's also having a ton of gas...wondering about gas-bloat now. We got 100 ccs of air off his stomach along with 35 ccs of residual 2 hours post-meal last night.

I'm thinking he most definitely has a motility problem....whether it's his stomach or intestines or both...I have no clue. I'm just ready to move on and have other tests done, but I don't want to rush the doc or make him think I'm second guessing him...but it just seems things aren't right. I don't know if this is all because of the constipation, but what caused him to get that way in the first place...and it's not just his age because he was getting constipated way before that....ugh....

we were so careful and thought we had done all the testing we should do pre-op and felt good about our decision...we didn't have a choice because he was having life-threatening events....but still.....I think now he has probably had an underlying disorder we all missed.....because we did check for it.

so....any advice is welcomed...sorry it's so long.:hairpull:

Oh, boy--I have no experience with tube feeding; however, it surely sounds as if he has emptying issues.

Our GI and feeding team have said all along that my dd has emptying issues; however, we have never tested for anything. It was always just sort of in the backs of our minds that she has issues with constipation and severely limits her intake; however, we just sort of go day by day. I had asked recently about the tests involved in diagnosing/pinpointing emptying problems and there were mixed reviews--many people said that the tests are unreliable, which could very well be why it wasn't caught when you initially tested for it.

In your case, the emptying issues sound pretty serious--again, though, I have NO experience with tube feeding, so I could be wrong about this. Either way, I think it warrants a call to your doctor.

:-( I really hope you are able to get some answers soon.

I am afraid that I am not going to be of much help here, either. My youngest son does have DGE and that was determined by a milk test at the age of 14 months. As he had so much going on at the time the ped and GI decided not to address it and that is the way things have been since. My son fought lots of eating aversions and for a long while when he did start to eat he would skip a couple of meals afterwards when he did eat. Again, they did not want to put Iain on another med, saying that they were unreliable anyway. From being here, I know that to be false, but we muddle through and it is not seemingly as bad as it onced was for Iain, but it is still there.

Your situation is very different from ours and it sounds like you do need to have it addressed. Hopefully your new GI will take the time to look thoroughly into this as although I am not familiar with tube feeds, it sure sounds like you are venting a lot and having problems..

The intermittant loose stools can definately be part of the impaction problem, though. If he is impacted or severely constipated it stretches out the intestines and you will get an "overflow" which is created. It is not pretty, it is downright foul but it literally "spills" out of them. The key is to get rid of the impaction and then in time the motility will increase as the intestines will shrink back to normal size (can take several months, by the way). I have plenty of experience with horrific stools, unfortunately.:sad2: Does he take anything for stool softening?

I am not sure how reliable emptying studies are, but many here have lots of experience with it and they will likely chime in later. Again, we just had the milk test done and it was for emptying and for reflux, but it is not seemingly the most common test you seem to do in the US.

Hope you get some answers.:hug:

Brandi, I'm so sorry to hear that things aren't going well for Noah! I'm not much help in the DGE department...we did an emptying scan before Ava's fundo, but even though it all *looked* normal, we still aren't sure about things b/c of the major issues she was having then. Ava's getting a g-tube next week, and I just have a few questions for you, as I know nothing at all about it really...

What does it mean when you say "we vented and got 115 ccs off his belly?" Is that air, or formula? I know that's probably a stupid question, but if someone could help me out, I'd really appreciate it! Also, "pulling around 1/2 his contents off 2 hours after a feed"? Does that mean taking it back out thru the tube???? Please let me know if you have time, I'm clueless!!!

I hope that with the old records, the new GI will have some answers for you guys, and I hope to see a good update from you soon!!!! Big hugs for Noah!

I don't know much about tube feeding/venting, but

Allie's GI wanted her off the Reglan for 24 hours prior to her emptying scan. So, we took her off of it.

Luckily, she contintued to do well off of it so we never put her back on it.

This could have skewed the results of the emptying scan.

When I say 115 I mean it was actual contents...although we are getting air too...like 100 ccs the other day. We do take it off through an extension that goes into the button...we don't really have an actual g-tube right now...a button, which is smaller and less of a hassle (I think).

By the way, my new doc that we started to see in June is my pediatrician...we aren't seeing a GI right now. I trust my ped better anyway. They have a lot of experience with problems similar to Noah's because of my friends little girl. She goes to Boston to have her girls treatment by a motility specialist there.

I went yesterday and we did a KUB again. We also did a CBC. The KUB showed a bunch of air....and the CBC was normal. They are going to do another upper GI probably next week because they think the wrap is broken down or undone. He also mentioned another emptying scan. Worse case scenario, we'll go to Boston and have a manometry if things don't improve. He's on pedialyte right now and he's handling that, but we can't keep him on that forever!

He does also have diahrrea now. We have been giving him miralax...but it always does this....we go from one extreme to the next with it. It's a vicious cycle.

I hadn't updated my signature. Noah has been off reflux meds for about a month and half....and now we're back on the Reglan.

We'll just have to wait it out through the weekend. My ped said he was really just hoping that with some time he would have gotten better and at this point...he knows he needs to do some other testing. He said he never doubted me that he was so sick...just wishful thinking.

I felt much better last night about Noah's situation...as hard as it is right now.

Thanks for your chimes.....I appreciate your input.

Oh yeah and my ped said that this time he will most definitely not be on reglan for at least 24 hours before scan!