Posted By Posting
Nov 24, 2008
molly's mom
Feeding Tubes
My daughter (4months) has been on an NG tube for about 8 weeks. She has severe acid reflux and soes not want to eat much on her own. Has anyone else had an experience like this? How did you get your child off the feeding tube? We have ruled out almost everything that could cause her to not want to eat. I just don't know what to do anymore. I feel like everyone tells us just to wait, but it isn't getting any better.
Nov 25, 2008
jedd'smommy
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
(((HUGS)))
I don't have alot of time right now, because Jedd has an early Cardiology appt t his a.m. so I need to hop in the shower before I feed him. But, I will be back much much later today to post something. I have to wrk as well today so it won't be unitl later tonight to where I can get back to you.

Just wanted to let you know that it IS possible to get off a feeding tube. JEdd was 100%NG fed and then 100%G fed for about 18 monhts. He is now 100% oral even though he still has his G tube. We aren't using it right now for the first time ever since June 26.

Just a few ?? to help me later....

Why was the tube placed???

Are you in line to get a G tube placed???

What kind of formula are you using????

What exactly kind of tests have you had done for the Reflux???

Was she a preemie??

How much does she weigh now????

Are you seeing Early Interevention or are you getting any St or OT feeidng feeding appt.???

Anything else you can think to ad dwould help me.

Here is Jedd's Caringbridge site if you want to read some of the entries in there as well as my Myspace account where I used to blog about JEdd's medical stuff....

http://www.caringbridge.org/visit/jedd

http://www.myspace.com/theonionjewell

Nov 25, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Sometimes when the ng tube has been in for a while, it can actually cause more severe oral aversions because children don't like the tube down their throat and they don't like it when you have to change it . For that reason, when the ng has become inevitable and the child has had it for a long period of time (longer than a few months), most children will do better with a g-tube. A g-tube helps with the oral aversion because it's not all up in their face. We went straight to a g-tube. Mostly for Quinn's age. She was 15 months old when she got her placed. It has been a *life-saver* Quinn too is almost completely oral now. The last time i gave her a g-tube feeding was about a week ago and those are now sporadic so it's really nice. Yes, there is hope!
Nov 25, 2008
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
My son was on an NG tube for 4 months (from birth due to cleft palate) then switched to a G-tube. Our GI doc's view is that NG tubes are temporary and as we knew Charlie would be on a tube feed for several more months, we switched over. He has failure to thrive so our initial focus was getting him to gain weight vs. getting him off the tube. My advice would be to get the reflux under control first. We are in early intervention and I am finding that the meds control the acid and discomfort but time, growth and development are what 'heals' reflux. Charlie is one year now and entirely tube fed but my goal in 6 months is doing some oral feeding 3X a day. We are already seeing in EI that he stronger and more coordinated physically and is less oral averse and does not immediately swat your hand away when you try to touch his face. My advice would be to focus first on the reflux and help your daughter get more comfortable while at the same time trying to get as much food into her (tube or otherwise) as you can. The more she eats, the stronger she will get and the rest will follow. I hear you it is difficult when people tell you to wait. I am a very impatient, results oriented person and this has been a struggle but it does get better! And the folks here are great so reach out whenever you need it. Susie
Nov 25, 2008
jedd'smommy
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
For us the NG was a big deterrant to gettign JEdd oral. We actaully fought to get a G tube. He got it in Aug of 07 and by Nov of that year he started to become willing to eat some buy mouht. Very quickly. We were NO where near gettign off the tube, but it was def. progress.

Little by little we climbed a huge mountain. Jedd is now completely oral and has been since June 26 of this year. This is the biggest accomplishment of his litle life, well, at least in his Momma's eyes....LOL

It was hard, I'm not gonna lie to you, it took up ALL of my time, but I am one determined, stubborn person. There wer edays when all I did was feed him. I had NO time to go anywhere else. He had to build up the strength in his mouth so there wer etimes when he coudl only take 2oz by mouth so we were on 2hour feeds. We were then able to move to 3oz feeds and 3 hours apart and then even tually he was able to take in much more and to be able to tolerate it. You see, we also had to stretch his belly.

Before becoming oral he could only tolerate around 2.5 oz via tube bolus so trying to get to 8oz orally was a HUGE HUGE feat for us. It took just about a year of this.

But it all began with getting rid of the NG and goign th eroute of hte G tube. that was the start.

Let me know if you have any other questions.

Check with your
doctor first!