Well I guess we know why Sam won't eat by mouth and retches on the tube. His peliminary report from his emptying scan says he only emptied 5% in 1 and 1/2 hour. The GI wants to do pyloraplasty surgery. She wanted it done with the fundo, but the surgeon wanted to see if it would resolve itself. Has anyone had this? What should I be pondering? He has been on 1.7 ml of reglan 4 times a day for the last 12 weeks since his first scan showed dge and it hasn't helped. I am relieved to know what's wrong, but another surgery, my God. :banghead: :censored: :hissyfit:

Wow, I don't have any advice on this...but am glad to hear that the emptying scan gave you some more answers.

Poor kiddo...hopefully this will be his last surgery! :grouphug:

I've never, ever heard of emptying that severe. That is awful. Allie emptied 13% after 75 minutes, which they deemed pretty severe. Our GI said with emptying that bad, a G tube should not be placed, but a J tube should be. You may want to ask about this.

Also, before doing the pyloroplasty, (which is cutting) I would ask for a pyloric balloon dilation. This is very non-invasive, no cutting, which consists of using a small balloon (insterted via scope) into the pyloric valve to make it a little wider to let the food travel through faster. It can't hurt. Google the term and you'll find out more about it. Our GI was going to do one on Allie, but during her scope, he said that there was no narrowing of the pyloric valve, so there was not a need.

Hang in there and ask for more options before going with the pyloroplasty. I think that peridotbabes knows more about this than me, try pm'ing her.

Christyn

Those results are a significant delay and if I were you I would think about possibly having him evaluated by Motility specialist before any more surgery.

First,because if a child has a delay that is caused by nerve damage more abdominal surgery is most likely going ot make it worse.Second,you probably need to find out the *cause* of the Delay because if he has Nerve damage which is causing the stomach not to contract properly then when the PP is done there will be no control of how fast food moves through and he is more likely to end up with Dumping.Once this surgery is done it's done and you can't undo it.I would suggest maybe getting another opioion....5% is a very significant delay.One of Grace's was only 5% and if we had done a PP it would have been a nightmare,that's why we chose not to do the Botox.

Of course every child is so different and I am not in anyway trying to say that your child has what Emily Grace has I am simply just speaking from experience because I know all to well how much Motility and Vagal nerve damage can be overlooked.

Hugs to you as you make this decision.:hug:

Mag had a pyloroplasty at 8 weeks for pyloric stenosis. It can cause dumping syndrome that can be temporary or permanent. It also can cause the pylorus to not close properly leaking acid into the intestine.

Oh Ladies, I am so sick. I don't know what to do. How can I feed him by the tube at all! Knowing his belly isn't emptying and he has a fundo so I am just adding and adding. The radiologist said at night he is probably just digesting the first bottle. In the pictures there was like no difference from the first to the last. She said we should have seen his intestines but did not. We see the GI on 12/26, but I want to call sooner. I so appreciate your words. I am really at a loss and just feel ill over this.

Kerri, I'm so sorry! That's the slowest emptying I've heard of...you must be so sad! I don't even have any good advice for you, just lots of :hug: !

Kerri I am so sorry that he is having such severe problems with the DGE, I wish I had some experience or knowledge to share with you but big hugs, you will get through this.

That is severe. I have never heard of it being that low. I know from Iain's testing that a "normal" stomach empties 50-70 % within one hour. Iain was at 24%. At 2.5 hours he was at 45 %. He has never been treated for DGE and this is something I am addressing with our GI in January.

I have absolutely no experience with pyloraplasty surgery, so I can be of no help in this regard. I would just sit down with the GI and ask him:

1. Why are you suggesting this surgery? What will it correct?
2. Is there a possibility it will not correct the DGE? Or have the desired effect?
3. Is there any other way to help your child without this surgery?
4. What should you do for feedings right now?
5. How will the feedings change after surgery?

I am sure that there are 100 more questions you could ask, so I would suggest highly that you get yourself a little notebook, have someone tag along to the appointment so you can have concentration on the questions you want to ask and they can keep Sam busy while you do.

I am so sorry I can not help at all, but I am offering big time :hug:

Please keep us posted.

I just saw this Kerry, I'm so sorry. I know that you must be sick w/worry.

I have no advice, but what Leigh said sounds very reasonable. Sit down and talk to your GI about this.

((((hugs)))) You poor thing. :hug:

No advice here either - but I know the feeling of second guessing what I am doing. Hang in there, gather all the info you can and follow your gut.

Poor baby, feeling full and you are still trying feed. Poor Mom, knowing her baby HAS too eat but really can't b/c there is no room to put it. I hope you can get something done quickly, I know how awful the thought of another surgery can be. It is great the others moms gave you some good ideas to start with.

At least now since the test you know what you are dealing with.

Best wishes on your appt. You know we are all sending good wishes :grouphug:

oh good hevens that is awful you poor thing i realluy hope that something is done soon

Hugs! That amount, or lack there of emptying is awful! No real advice except research research research, and google, google, google. I would personally look into other options such as the balloon dilation before something as permanent as the PP though. :(