Posted By Posting
Jun 03, 2010
jean9
FEEDING TUBE TYPES/REGRETS?
Anyone out there with a child with no other major health probs. except GERD, FTT and chose tube feeding?

Anyone regret chosing tube feeding?

What type of tube is best? DO PEG placement 1st and then change to Gtube? Go straight to gtube? What TYPE of gtube? MCKEY, etc...?

At the beginning of tube use, do all kids have worse reflux and vomiting?

THANKS!!!

Jun 03, 2010
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
Of the literally 100's of tube feeders I know online NONE of them regret for a single second getting a feeding tube. You will see your child and thrive for the first time in their life. The day Jedd's was put in (NG tube) I wept because in 9 weeks of life, I have not once seen his belly FULL of milk.

Most DRs will start with an NG dependent upon age and see if the child gains. I wouldn't stay with it long though, it can make the aversion worse.

As far as how it's placed, you really don't have a choice in the matter, it's all up to the surgeon who does the job. At our local hospital, they do straight MicKey insertions. We never had the long PEG tube ever. He came right out of surgery sporting his new button. It was great for us. The long tube can be pesky. But, there is the thought that with a long tube the stoma tract heals better.

We loved our MicKey......the only downside.....the anti reflux valve blows FAST. I mean super fast. I never knew that they had an anti reflux valve inside of them. Less than a few hours after placement Jedd's tube would leak whenever we opened it. They say, when the child's reflux is not under control, the acid eats away at the valve....true in many cases I know.

MicKey's are a balloon button, some people like buttons without a balloon in them. Personally, I like the fact that ours had a balloon, this meant I could pop a new one in at home. With non balloon buttons, you have to go to I.R. at the hospital and get in changed. Imagine that when one falls out on accident, it means a trip to the hospital's E.R every time to get an appointment with I.R.

Jedd's fell out at a mall play place once when we were wrestling with him. I quickly pulled a 10cc syringe out of my pocket, flipped him over and popped it back in. I used to keep that spare syringe in my pocket for occasions just like that.....only happened once though. He yanked it at nap time once and required an E.R trip...LOL

Yes, the vomiting can get worse. This can be controlled by doing slow drip feeds for a while after surgery. You have to remember, they change the "shape" of the stomach when they do the surgery. This can cause nausea. Jedd's motility was already slow to begin with and we ended up doing about 2 weeks of slow drip 24 hour feeds.

My take on a feeding tube and FTT is this.....and some people don't have the same feelings.....

During the child's first 2 years of life if when you want their intake of nutrition to be at it's best for the brain and eye development......you can't replace this time...waiting was not an option for us. For me personally, FTT is nothing to be played with....a tube gets the child the nutrition they need to develop properly. I've read stories of FTT so bad that the child was delayed in every area. Within a few months of tube feeding, the child was normal in every area.....amazing what good nutrition can do for a child.

A tube also allows you time....time to work on those oral skills without any pressure.

IDK...just my 2 cents from a former tube feeder who is VERY pro tube feeding. :-)

Jun 03, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Hi Jessica, Just piping in to say thanks for the great info. (even though I didn't post the questions). Eric is still on the bottle, but the day will come when he cannot take enough this way. His EE is really bad & we are not having any luck with food trials. I found it weird that the hospital also mentioned he had mild hypospadias and a VSD (same as Jedd). So far, neither has needed surgery. Thank goodness your son skipped the food allergies/EE - what a mess. What site do you go on regarding tube feeding - just in case I need for the future? Take Care, Ellen
Jun 03, 2010
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
We were told that all hypospadias are repaired now adays....he didn't look "normal" down there at all. His foreskin was on one side and the other side didn't have any. His opening was about 1/4 of an inch off, before his repair, if he was on the changing table and peed, he would pee straight at me, not up in the air...LOL It went completely side ways.

As far as VSD, there are varying degrees. We had a teenager in our church who made it to 5 years old before she was repaired. Jedd was FTT in soo many ways, they put him up for repair and he was done. Some repairs don't ever need to be done, it all goes by how BIG or SMALL the hole is. Jedd's was situated at such and was soo gigantic that we are surprised he made it to 6 months old actually.

We could quite literally FEEL the blood shunting to the wrong area just by putting our fingers onto his chest.....so, the whole was beyond huge.

FWIW, if the bottle is working and he is growing, I'd keep at it...LOL You can always work with Early Intervention on it.

I learned all of my tube feeding and food aversion stuff from: www.parent-2-parent.com/forums

Jun 03, 2010
samsam
feeding tube
My daughter was a 34 week premie. She is totally healthy and developementally normal except for severe GERD that developed when she was a little over two months old. It got so bad she almost totally stopped eating and ended up with a NG tube for almost four months. We were told if she eventually drank enough by bottle with the NG tube in, she might avoid the G tube. We got close twice but both times a common cold made her intake plummet. She was not thriving and ended up with a G tube 2/23/10. We are very upset about it but felt we had no choice. She would have gotten worse in terms of reflux and aversion with more NG tube feedings. Now we are told it could take 6 months to two years for her to eat normally. The uncertainty creates the majority of our anxiety. We don't regret it though. Her tube is a "lemon" from the start. It keeps opening and the feeding bag tube attachment falls out very easily. The gastroenterologists have never seen a brand new tube malfunction like this! Anyway, we now go to speech and swallow therapy. I am not sure if it helps but we do what the doctors recommend. It appears that Clara will grow out of it when she wants regardless of therapy. I hope I am wrong. Having a G-tube is a love-hate thing. Noone wants their child to have one but without it, the child cannot thrive. I have to admit, I breathed a sigh of relief when the NG tube and G-tube went in. The only anxiety worse than artificial feeds is the lack of nutrition for one's child.
Jun 04, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Thanks again Jessica. I'm going let Eric drink his formula as long as he can, but as he grows he will need so much more & it will be much harder. Hense, the feeding tube for overnight. BTW, no one can hear the heart murmur anymore, but I will follow up with cardio, as planned. And, Eric looks completely normal down there, I believe it's just a matter of the hole being off a little. The ER Dr. at CHOP mentioned it when he was an infant - not sure if it is or isn't. He seems to be able to pee in the pot ok!!!! Glad Jedd is much better these days. El
Check with your
doctor first!