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

[Guest guest]

It was very obvious due to the multitude of symtoms that Zipporrah had GERD and that the Nissen was necessary. If they would have done the G-tube placement without one she would still be having tons of problems with vomiting with almost every feeding. The docs we have spoken to say ph-probes aren't necessary if the symptoms prove reflux is happening, especially when you can see and feel the stomach contracting to push the food up and out. We have had several docs tell us that. They said the ph-probe can be useful when in dobt but not necessary in many cases. You mention keeping her tube open. I know that the tubes aren't really supposed to leak (new ones anyway) but Porrah's does and she would leak food out continually if we did. Her first replacement will take place in early July and I am hopeful that it will not be a "leaker." When we attach a burp tube to her, the bubbles and phlegm just literally shoot out through the air with lots of pressure. Is this the way most peoples' do? She always has been an extra burpy baby (Before the g-tube she had tons of huge burps and swallowed tons of air while attempting to nurse.) I do really like our Speech/feeding Therapist and have seen good things with Asenath because of her. She seems to be doing a great job with Zipporrah as well thus far. After we go to Mayo next wek and see a GI I may start her on meds again for the retching. I want to see what the GI doc says first. I also really want to see what can be done about the dumping syndrome as she has terrible dark green/black diarrhea each time she feeds and also has sweaty feet and palms caused by stress on the body (a kind of shock issue I was told). Thanks again for your help. We will see what the GI wants to do. Who knows, she may order a ph-probe when we do the other tests. We have never seen her for our girls. She is a new GI at Mayo who used to be here in Des Moines, Iowa. We used her for our adopted daughter Kezia a couple years ago and she seemed very thorough and good. I just hope she knows something about Mito now that she is at Mayo. Darla Re: /all-Kids who have no or little oral feeding-?'s Darla,I am shocked that they did a Nissen without a pH probe to prove that there really was GERD causing the problem. Our vomited regularlly. The GI even saw it. Even so, we had several pH probes to prove that GERD existed. Our had mostly mucus when she started gagging. We refed it. That way we did not have to worry about electrolytes. You could always add water to the mucus to make the bubbles go down and then refeed it If you don't keep the tube open, it is going to hurt.Our feeding therapist is a speech pathologist/therapist. Since speech pathologists have an MS and they specialize in facial structures, it seems to me that they would be best to use as feeding therapists. We have not had the greatest luck with OTs in general.Our has GERD even post Nissen. She refluxes at times associated with feeding. It still happens. We are using meds now and she will NEVER be off of them. If your daughter is still having problems, I would ask that they restart the meds and see if that helps. takes plenty of meds right now. I hate to remove her g-tube if she faces life with tons more meds.

[Guest guest]

Darla,

We have been to several GIs and all have suggested pH probes. The thing

about GERD is that most kids outgrow it by the age of one and almost all do

by the age of two. Here, the only way you could get a Nissen before two is to

have apnea directly related to GERD. Our had apnea and GERD but

they were not related. She got her Nissen at two because she had asthma. It

is a big surgery with lots of possible problems and that is why doctors try to

avoid it at all costs.

It is normal to have lots of gas. This is bad right after surgery because the

abdominal contents have been manipulated. We had a PEG tube at first and

then had a Mini for several years (after trying several brands of buttons).

When you place the bolus feeding tube in the button, it bypasses the reflux

valve and leaves the button open to air. This is when you get rushes of gas,

etc. There should be no leaking through the button at any other time IF the

reflux valve is still working. A PEG has no reflux valve and just opening it

will

cause fluid and air to leak out.

We would leave 's tube open right after feeding. If you are having the

kind of gas that you describe, and all the gagging, etc. I would bet that you

are feeding her more than she can tolerate at too quick a speed. Slow down

and see if that helps. That was why we fed at so slow a rate. The

gagging was too bad. So was the gas.

We did not leave the tube open without us being right there and it was not

long term. We just left it open until things calmed down. What type of tube

does she have?

Our got her g-tube about a year before she had her Nissen in an attempt

to help her gain weight without having to undergo the very hard on her body

Nissen.

If you release the air more often, it may actually not come out with as much

force. Can you vent her every hour during the day and see how she does?