Posted By Posting
Feb 15, 2009
jean9
anyone choose g-tube for FTT/reflux but no other health probs.?
My little Libby is fortunate not to have any other health complications (that we know of!) except reflux--resulting in severe food refusal, FTT and weight loss. We're seriously considering g-tube feeding and wondered if anyone else had a child with no other major probs and still opted for tube feeding. We're afraid it'll make her start vomiting and/or that it'll be permanent and she'll stop oral feeding altogether. any advice? THANKS! : )
Feb 15, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

I cant offer too much advice, as mine has complicated medical issues

Is she being tubefed now via NG?(this is usually how tubefeeding begins)

What testing has she had, and have you tried feeding therapy?

What meds have you tried and what doses?

Tubefeeding can increase vomiting because there is more food being pumped into the stomach, sometimes it does, sometimes it doesnt. It can cause more issues with oral eating, because the child wont feel as hungry,but the proper feeding schedule can help with that, as well as feeding therapy.

In terms of FTT, a childs development,brain development can be affected, so tubefeeding is well worth of the risk IMO.

Feb 15, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
One more thought: what formula and what caloric concentration of it is she taking? Have you tried adding duocal??
Feb 15, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
So you're gonna get BOTH Jessica's tonight..LOL
I would serisously do a clinic ASAP befor edoing a tube. Get all the testing done first to rule out any helath issue for SURE.

I'd do an UGI, an Impendance study, GES, and any Manometry testing as well.

One that is all cleared I'd do a clinic really I would avoid the tube at all costs as long as like Jessica said, milestones are being reached. That is physical and mental milestones. Because of the brain dev. issues. You don't mess around with that. If they aren't I'd get a tube and go from there.

NOt to be soooo agianst tube feeding since both Jessic and I d/have done it....no matter what they tell you....tube feeidgn will be LONG TERM.

They will tell you it will be for a "short amount of time" until it's not needed any more. We used Jedd's tube for 2 years. That is what was short term..yeah, right.....

I nkow ZERO people/families who tube fed for a short amount of time and were done. Once you start tube feeds the feelign of being hungry will dimish quickly. VERY quickly. Even if you only do night feeds. Then you start the ever increasingly hard taks of wening back to oral feeds, which the child will NTO want to do because they will have forgotten what it is like to be hungery in the first place. VICIOUS cycle.

Jedd started tube feeds at 9/10 weeks old, he did tube feeds until about 2 years old. he STILL will not demand feed. EVER. He will snack on small things, but the VAST amount of his day is spent feeding him and giving him water on a scheudle. And I stick to it.

He rarely says or reacts to hunger. I can audibly HEAR his belly grawl and he won't ask for food every morning.

I like to sya that a tube is a both a blessing and a curse. A blessing because it saves your child's life. A curse becaue it is an undending task to wean from.

I can't express more taht I'd get extensive GI tract testing done to rule out GERD and reflux issues and then pursue AGRSSIVELY with a feeding clinic. A GREAT one.

Feb 15, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
So you're gonna get BOTH Jessica's tonight..LOL
I would serisously do a clinic ASAP befor edoing a tube. Get all the testing done first to rule out any helath issue for SURE.

I'd do an UGI, an Impendance study, GES, and any Manometry testing as well.

One that is all cleared I'd do a clinic really I would avoid the tube at all costs as long as like Jessica said, milestones are being reached. That is physical and mental milestones. Because of the brain dev. issues. You don't mess around with that. If they aren't I'd get a tube and go from there.

NOt to be soooo agianst tube feeding since both Jessic and I d/have done it....no matter what they tell you....tube feeidgn will be LONG TERM.

They will tell you it will be for a "short amount of time" until it's not needed any more. We used Jedd's tube for 2 years. That is what was short term..yeah, right.....

I nkow ZERO people/families who tube fed for a short amount of time and were done. Once you start tube feeds the feelign of being hungry will dimish quickly. VERY quickly. Even if you only do night feeds. Then you start the ever increasingly hard taks of wening back to oral feeds, which the child will NTO want to do because they will have forgotten what it is like to be hungery in the first place. VICIOUS cycle.

Jedd started tube feeds at 9/10 weeks old, he did tube feeds until about 2 years old. he STILL will not demand feed. EVER. He will snack on small things, but the VAST amount of his day is spent feeding him and giving him water on a scheudle. And I stick to it.

He rarely says or reacts to hunger. I can audibly HEAR his belly grawl and he won't ask for food every morning.

I like to sya that a tube is a both a blessing and a curse. A blessing because it saves your child's life. A curse becaue it is an undending task to wean from.

I can't express more taht I'd get extensive GI tract testing done to rule out GERD and reflux issues and then pursue AGRSSIVELY with a feeding clinic. A GREAT one.

Feb 16, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

I was reading back on some of your previous posts, and I have a better general idea of your situation, and the testing that has been done. First, even with normal emptying scan, some reflux kids may benefit from using a prokinetic like reglan or erythromycin, I would give it a shot again.There are more PPI's, but if she has no esophageal damage on the scope, then the acid level is under control with the prevacid.There is also a med called Periactin, which is frequently used in kids like yours as an appetite stimulant.Since she is rarely vomiting(frequent projectile vomiting,bloating/distension,infrequent or very frequent bowel movements, is usually seen with motility issues among other symptoms), no pain(you would know it if she was in pain), I would say that probably, there is no motility disorder, but it could be possible.What are her bowel movements like?

NO matter what they may tell you, tubefeeding will not be short term and can lengthen the process of getting her to eat orally. I would really try to get her in INTENSE feeding therapy like was said above first, since she has no complications, there is a HUGE chance some of it is behavioral which tubefeeding isnt going to fix in the long run..Reading back, what you describe about her not seeming to be in pain,annoyed you want her to eat, rarely vomiting,it sounds very behavioral. I would really try to avoid the tube at all costs unless she is having dev.delays or is very ill, then of course, I would jump all over it.

I also saw in prior posting that fundo was being considered, for what reason??If there are no severe esophageal damage,aspiration, or life threatening complications, having a fundoplication done is absolutely NUTS .An "esophagus dilated possibly more than than norm" is no reason to do a fundo, when there is no damage,no aspiration, little vomtiting, it is not an issue. Fundo does NOT fix FTT or oral aversion(again, feeding therapy!!), it actually makes aversion WORSE and frequently causes swallowing problems due to the effect it has on esophageal motility. It is irreversible, and has many possible serious complications.It can be a long and very painful recovery, and is not a cure because it frequently fails. I hope this is not being considered still.

I am trying to cover all the bases lol...

Feb 17, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
is your daughter on a PPI? Z had TERRIBLE food refusal until we started him on Prevacid...then he started eating MUCH better (of course a couple months later the puking started), but once the pain was under control then he didn't mind the eating as much. I would explore EVERY possible avenue before doing the g tube. I mean, if it's necessary, nit's necessary, but it should be a last resort. We are under the constant threat of a fundo and tube, but we have a great GI who really wants to explore every option first. Good luck!
Check with your
doctor first!