Kids who have no or little oral feeding-?'s

[Guest guest]

We are still trying to deal with Zipporrah's swallow issues, gagging, coughing, phlegm build-up, and reflux tendencies. I know we have discussed many of these issues, but I want to know what peoples experiences with the aftermath of nissen is as well as if there is anything I can do to lesson the gagging and coughing throughout the day. We are working with a good pulmo doc so we know we are doing everything there. Some things I am wondering about is why is she still having attempts as throwing up and can this still harm her esophagus even though she does not get anything out? We have to use the burp tube to stop her vomiting quite frequently and know this isn't good for her to lose sodium or food, but the phlegm is a big problem. (And of course I am afraid to start using the med to reduce phlegm because of the MAJOR side effect possibilities.) Any time I nurse things only get worse even though she hardly gets anything anymore. What is your experience with this? Do you think she will be able to eat orally much in the future? The docs think she will NOT get everything back so I am wondering what your experiences are. How dangerous is all this for her? Any information or suggestions you can give me would be very much appreciated.Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma... Zipporrah (7 mon.) Mito, strokes, SID, G-tube, GERD w/ nissen, asthma, tracheomalacia, tracheal ring, disautonomy, hypotonicity & hypertonicity, migraines, major swallow problems... Luke (16) Suspected Mito w/ stroke episode, hypoglycemia, sensory issues/disautonomy issues... and the other 6 kiddos (some with soft signs) Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla,

Our is 6 and had a Nissen at two because of continued GERD. She has

also had problems with dysphagia. I discovered how to handle things rather

slowly but now have it mostly down to a science. At the first sign of any

gagging or even a look on 's face that there may be a gagging episode

we vent. The first year after a fundoplication this is essential. Ours (and

probably most of them) loosened up over time. It takes the body quite a while

to get used to this.

Our still gags more than the typical kid. She also still refluxes. She

has

never been off GERD meds. Have you had a post-Nissen pH probe?

still takes Nexium.

To reduce gagging, we fed VERY slowly. By the time she had her

Nissen, she had stopped nursing and really ate very little. She weighed only

about 16 pounds (at two). We fed her with her g-tube. She got the g-tube at 15

mo. We pumped her at night very, very slowly (15-30 mL/h). When we did

bolus feeds, we gave her only about 15 to 30 mL. We had to give her about

15 mL at a time and then wait 5 to 10 min before giving her the rest of the

feed. It was very time consuming and difficult. If she started urping things up,

we vented her, collected the stuff and then slowly put it back in after about

five

minutes. OK, it sounds gross to put vomit back in but that is what stomach

contents are like. If we had not done that, she would have had bigger

problems.

It took a long time to be able to eat. She is six and just within the

last

year started eating orally. She eats enough now to maintain her own weight.

Our dilemma now is do we remove the g-tube or not. She and my hubby

would like it out. I wonder about the wisdom of that. If she has mito (and

what

else fits, especially with her brother's testing indicating mito?), her future

points to much more medicine than she currently uses.

learned within the last two months how to eat a chicken nugget. She

can also eat bologna and hot dogs. She can eat shredded meat. This is a vast

improvement from where she was last year. I now have hope that she will

eventually be able to eat meat in the future. But at 6 years old, she eats much

more like an 18 month old to a 2 year old.

I would suggest a pH probe if one has not been done recently. I would also

suggest a swallow study if one has not been done recently. Gagging and

retching can loosen the stitches in a Nissen. Refluxing can cause espohageal

damage even post-Nissen.

[Guest guest]

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.