Scope>Feeding Tube>NO ANSWERS?????

[Anonymous]

Our child recently quit feeding by mouth or made it so hard it was impossible. We were forced to put in a NG feeding tube, which has its own problems like him tearing it out once already.

The doctor (the GI specialist in our area) has no answers. We had the scope and he found no reason why he should be refluxing and this out of control. We are still waiting on the results of the biopsy and we are going to get an MRI. He gave us Carafate, which has done absolutely nothing to fix the problem. The current course of action, an extremely ineffective one, is Neocate with Carafate as medication, feeding tube to eat, seems absolutely pointless because none of it has worked.

Anyone have any advice on where to go from here?
Also how to tape down this feeding tube, nothing seems to work?

(we are currently on Neocate and giving him Carafate)

[Anonymous]

I am so sorry to hear about this.

Carafate seems to be sort of a bandaid. Like a REALLY thick Mylanta. Have they ever prescribed a PPI drug like prevacid, nexium, prilosec or zegerid? Can you “hear” the reflux? for me, I didn’t need any test (altough we did do a scope) to tell us Landen had really bad acid reflux and that it burned. I’d hear it come up, he’d swallow it back down and scream for a long time following it. Between 4-7 months I fed him mostly in his sleep b/c I was so afraid of the feeding tube. I still have his daycare papers, where he would take 3-6 oz in a 9 hr day there! The prevacid really helped us and it took a long time to get him on the right dose (a high dose that is) and once he was, he started to eat better during the day again. Funny enough though, he never did take more than 6-7 oz at a time after that and it always had to be from me. I know for some babies, once they have a bad aversion they need therapies b/c it is behavioral at that point, even after that pain is gone.

I don’t know the answer to the question about the tape. But I do know that there is another board that has lots of tube-fed babies and kids. Try http://www.parent-2-parent.com Not to send you away from here, we would love to help with anything, I just know that they have lots of tube-feeders.

Hang in there!

jilly782008-06-30 08:19:23

[Anonymous]

I would agree about the PPI. It sounds like he isn’t being medicated properly and the pain from the reflux has caused the feeding problems.. I’m not a doctor though!!

The carafate isn’t going to really help the overall acid problem.. it might help him to eat more comfortably for a short time, but you need something that is going to get the acid under control.. permanently.

I don’t know much about feeding tubes, so hopefully, some of those mommas will chime in.

I hope you find some help soon!

[Anonymous]

your doc really can’t tell much of anything by just looking through the scope—the real info is found on the microscopic level, so hopefully the biopsy results will give you some better info.

i can’t believe he has only given you carafate and not a PPI. most docs don’t scope before at least doing a trial of a PPI.

why is he sending you for an MRI?

how old is your little one and what is his weight?

kevieb2008-06-30 18:27:48

[Anonymous]

The biopsy came back negative, no surprise there, we have had no answers to date. We have tried all the PPI medications and they seemed to do nothing. Prefacid was the most successful, if there is such a word with him. We have been on every single formula, nothing there either. He seems to make a fast adjustment to medications, then they become worthless in a short period of time.

We get 2-3 oz’s in him during our feeding time. We have the feeding tube, so we feed on the tube for 18 hours and 6 hours by mouth. I get one chance to feed him by mouth, so I take what I get.

The doctor is suppose to be the best in the area, but is scratching his head.

He weighted 13.9 today, so he is gaining weight, and is 3 months 2 weeks today. They tell us he is right in the middle for weight and growth. He looks great in color and stature, but the pain is amazing.

He wanted to do an MRI, because he wanted to cross off any brain issues, but he even said it is a reach.

das26_22008-07-01 13:06:18

[hellbennt]

this link to a discussion, from a mom who used to post here frequently, might help you?

Swallow/speech/nyc/thais: https://www.infantreflux.org/forum/forum_posts.asp?TID=9445&PID=82094#82094

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