Re: /ALL- Nissen problems-oral feeding

[Guest guest]

The nissen has helped her in not vomiting, but not to stop the dry heaves/tummy lurching issues. I am wondering if she is still having esphagus harm because a nurse told me the food can sometimes go up a little ways into the esophagus even with the nissen. Plus, now we are worried that her nissen may be coming lose as she has suddenly begun to burp again and hadn't been able since the nissen/mic-key button placement. It was only placed about 6-8 weeks ago so the thought that it may be coming lose is quite frustrating! Besides the burping, we have noticed an increase of gagging, arching, coughing, and dry heaves. I REALLY don't want to have to have her go through an operattion again, but know she can't go without a nissen as she struggles so much already WITH one. Is there anything further I should be aware of with the nissen coming lose? Another issues I have struggled with is the fact that her Prilosec was immediately stopped when her nissen was performed as the surgeon assumed all was fixed. Yet, she has NEVER stopped having dry heaves and I am unsure if this was a wise decision and wonder if she would be helped with meds. I too have noticed that viruses make matters worse, particularly in the phlegm issue. And every time she coughs, she starts to dry heave! I can't believe this could be happening already! We could really use a breather. I guess a good thing is that we are going to Mayo for a GI appointment (and etc.) next Tuesday (June 22) as well as the 25th and possibly testing inbetween days so may be there most of the week. This will be a good time to check all this out to see if we can help her more! Thank you for your help. Darla Re: Re: Kids who have no or little oral feeding-?'s Hi,My little Niki has been through the same thing. She stopped eating when she was nine months and wieghted in at a wopping 11 pounds. At that time no one knew she had Complex one so after several talks wtih the PEd, GI doc and Neuro along with extensive testing we decided to do the tube that went through her nose. WEll that just wasnt cutting it for any of us she was still losing weight and pulling it out of her nose. AT the same time the doc's were trying to figure out if we should be a muscle biopsy because they had no idea what was wrong with her. Anyway to make a very long painful story short. She had he first Nissan Fundo at the age of 1 on her b-day actually. It was horrible apparently 7 hours in surgery wasnt helpful in finding out had a hole in her diaphram and a hernia right next to it. Okay so now starts the retching it was so bad I would cry iwth her. It was as if she was seizing and I mean all the docs saw it happen but not one of them new what was wrong. Okay so finally her surgeon listend to me and agreed to do a test to see what was goin on in her little bdy. THat was 2 days before exmas. she was back in the hosptial one week later on 1/8/02. She was in surgery for 7 hours again and he came out and said it went well this time but that her fundo came undone and that was causing the jist of her problems and closing her diaphroam and removing her hernia. Now she still retches but they put her on a higher dose of reglan and if I tell you it is like a miracle she has 1.7mls three times a day and it helps her so much. Her main problem is that regardless of any meds if and when she catches a cold she still retches really bad it is as if her body slows down so much nothing helps her. She is now 4yrs old and still doesnt eat by mouth. However all the docs are against me removing her tube at any time only because it seems to them the one thing most affected by her mito is her esphogus as well as her stomach. But you know just today she had goldfish, my mom (who watches her during the day) called me crying becasue she ate a gold fish.

[Guest guest]

Darla,

They can do an upper GI or a cookie swallow to see if the Nissen is still

intact.

I would bet that it is still intact if she is unable to vomit. Some kids are

able to

burp pretty quickly. I will tell you that we were unhappy with our Nissen for

about a year.

The only way that they can totally stop some of the contents of the stomach

from going up into the esophagus is to make a Nissen so tight that one would

be unable to swallow anything other than spit.

We would sometimes just lay down on the couch and keep her tube

vented and open. This seemed to reduce her pain. We taught her to squeeze

her stomach muscles to push out air. We called it pushing out the bubbles.

You can always ask your GI to put her back on her GERD meds. A Nissen is

not a magic bullet for everyone.