ng tub vs. gtube anyone have suggestion?? - Mothering Forums

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#1 of 17 Old 01-07-2011, 01:12 PM - Thread Starter
 
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My daughter is now 2yrs old and has been on an ng tube sinve Sept. 20th, 2009.

Does anyone have any advice on whether a ngtube ot gtube is better? We love that our ngtube is low maintenance compared to the gtube that our friends nb baby has. Theirs falls out all the time and they have to take their child to the er to get it fixed. EVERYTIME!!She has started eating some baby food by mouth HOWEVER none of the gi doctors that we have seen since the feeding tube was placed can expian to use WHY our daughter was put on a feeding tube in the first place, nor will they take the "liability" of taking her off the feeding tube. They do not wish for me to start giving her solid foods however they REFUSE to do another swallow study. So I have started her on baby food and she is doing fine on them. We have only known people with BAD experiances with the gtubs(all kinds). Also my daughter has already had 3 brain surgueries done within the past 6 months and doing another surgery just doesnt seem like a good idea to me for a while. (It would be small surgery for a normal child but for her would be very major)

 

If anyone has any input please let me know as we are scheduled to see a NEW GI doctor at childrens on JAN. 17th 2011 so I would appreciate any input before then. THanks

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#2 of 17 Old 01-07-2011, 05:19 PM
 
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Why does your DD have a NG? Was she aspirating? What did the results of her last swallow study show? I have never heard of a child having an NG tube long term. In fact, our local hospital doesn't discharge with the NG. But as long as its working for you, that is great:) My DS has a G/J tube so if it does fall out (it did once) we have to have it replaced via interventional radiology. If a child has a Mic-Key Button G Tube, the parents can replace them on their own. We have been very fortunate that my son has had no issue with his stoma. His doctors always tell me that he has the best looking stoma site that they have ever seen. I guess that is a big benefit of the NG - no surgery/recovery required. If the NG is working for you and  you like it, I would keep it rather than doing a surgery.

 

Could you ask your pediatrician to order a swallow study? Thats what we have done and she has written up orders for it to be done with a private practice speech pathologist that does swallow studies at our local hospital. I would think it would be wise to do one to ensure its okay for your daughter to eat by mouth.

 

I hope you find good answers and a plan for your DD:) Best wishes.

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#3 of 17 Old 01-08-2011, 07:15 AM - Thread Starter
 
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She NEVER had a swallow study before they put in the ng tube. Our er here is the WORST. They even put her on a ventilator at the same time and they didn't know what was wrong with her and her o2 level was staying at 100% and went down to 98% at the lowest. After that disaster I ALWAYS take her to Inova fairfax hospital. I made them transfer her there at that time and when we went to fairfax hospital noone understood why she had a feeding tube and ventilator placed at our hospital. The ventilator was removed immediatly but the refused to remove the feeding since they didnt no why she had one and they didsn't want the liability if anything happened. We went back to fairfax er about a month later and my daughter was having increased seizures that were starting to affect her daily routine. At that time they decided to do a swallow study(Meanwhile she was having multiple seizures an hour and continued to haver them during the swallow study). That was the only swallow that has been done. At that time it showed that she was having jerking movements during feedings(thats what her seizures look like) and they said that that was a big concern. And they decided to leave the feeding tube in. We started to see outpatient a gi doctor from the Inova Fairfax hospital who is horrible worst doctor I have ever had. He NEVER answered any questions, wanted to put my baby on a $60 per can hypoallergenic formula(when my baby has never had any allergies), and never been a very good doctor for us. We have FINALLY been able to make an appt with a GI doctor from Childrens Hospital which we will see in about 2 wks. I am hoping that they will be nicer there and answer some questions. ALL of my baby specialists are from Childrens and they are all wonderful.

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#4 of 17 Old 01-08-2011, 04:37 PM
 
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My DDs had a g-tube placed at 4.5 months.  We switched from the tube to a Mic Key button 1 month post op.  If the button comes out (which it has), we put it back in ourselves.  We do not go to the hospital.  I prefer the button.  Long term NGs can cause degradation of the nasal tissue passages.  Frequent insertions can lead to oral aversions.  With the button, you know it is in place.  You can also put thicker feeds through the button since it is bigger.  We do a blenderized diet with real foods (no formula) and it has worked well for our DD.

 

Is your child still seizing as much?  If not, then I think another swallow study is warranted.  If so, I can understand why docs want to keep a tube in place.  They may not want to expose your child to more raditaion for a failed study.

 

I would say talk to the new GI and have him/her review all the medical records.  I would not do a g-tube unless you were looking at long term use.


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#5 of 17 Old 01-08-2011, 04:47 PM
 
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Goodness! I hope you can find a doctor who will explain things to you better :(  I think the ng/gtube each have their merits and specific reasons for use. If your dd is going to need long term feeding assistance, a g-tube might be a better solution, but yes, it is a surgery! So, as pp have said, if this isn't a long-term issue the ng might be best.

 

I had no experience with g-tube then got a foster babe with one. I learned quickly! And within about a week of having her the Mic-key button came out, I raced to the ER in a panic. I didn't have an 'extra' and they didn't have any there that were tiny enough, so they had to use a foley cath in the stoma until the next day when they were able to locate a tiny one.  We got an extra, they showed me what to do, and after that, whenever it came out, we just popped it back in ourselves--no problem! She took nothing by mouth due to a super tight Nissan procedure to keep her from aspirating, but the g-tube worked well and was very easy to use.

 

Good luck at your appointment on the 17th!


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#6 of 17 Old 01-08-2011, 07:48 PM
 
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I much prefer the G tube over the NG. Your friends that have to go to the ER to have them replaced need to give it a try themselves. It's really not hard at all. It's actually easier IMO than replacing an NG.

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#7 of 17 Old 01-09-2011, 11:27 PM
 
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My DD had an NG tube for about a year and a half and then we gave up and switched to the g-tube. I love the g-tube SO.MUCH.MORE. 

 

NG-tube is great for short-term use, but if long-term tube-feeding is in store, I say the g-tube surgery is worth it.  Just my opinion.

 

I hope you get good answers from the folks at Children's. It would be great for you as a parent to understand the reasons why your child is being tube-fed, and to know whether oral eating is in the near future or a long-term goal... best of luck!


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#8 of 17 Old 01-10-2011, 03:17 PM
 
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I much prefer the G-tube (or even GJ-tube actually) over a NG tube.

And I've actually never heard of anyone having a NG for that long before, here it's only used for short term (we're talking months here).

And I wouldn't use a NG for long term, I'd go with a G then, but that's me.

It's not hard to put a G-tube back in, at all. Really, my 7 yo. can do it on herself.


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#9 of 17 Old 01-19-2011, 10:48 AM
 
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Quote:
Originally Posted by anj_rn View Post

My DDs had a g-tube placed at 4.5 months.  We switched from the tube to a Mic Key button 1 month post op.  If the button comes out (which it has), we put it back in ourselves.  We do not go to the hospital.  I prefer the button.  Long term NGs can cause degradation of the nasal tissue passages.  Frequent insertions can lead to oral aversions.  With the button, you know it is in place.  You can also put thicker feeds through the button since it is bigger.  We do a blenderized diet with real foods (no formula) and it has worked well for our DD.

 

Is your child still seizing as much?  If not, then I think another swallow study is warranted.  If so, I can understand why docs want to keep a tube in place.  They may not want to expose your child to more raditaion for a failed study.

 

I would say talk to the new GI and have him/her review all the medical records.  I would not do a g-tube unless you were looking at long term use.



I don't mean to hi-jack the thread, but I have been wondering about making your own foods for the g-tube.

 

My dd just turned 6 and has problems gaining and maintaining weight because she has Cystic Fibrosis. Her Dr's have discussed placing a g-tube before. If we do it I would much rather be able to do our own diet rather than the prepared formula. Would you mind pm'ing me with some info about the diet you do?

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#10 of 17 Old 01-19-2011, 11:53 AM
 
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we blended food for a while. We got a vita mix and had a log of how many calories, protein, fat, etc he needed. Then I found foods and put them in the vitamix until he met those requirements, added water and blended. It took about an hour a day but wasn't too difficult, just a little labor intensive. For whatever reason, my son never gained weight on it despite putting plenty of butter and oils and such in it, so we eventually switched to complete pediatric which is a canned formula that is made from real food. He had issues with that too and eventually got put on an elemental formula and that's what he's on to this day.

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#11 of 17 Old 01-19-2011, 11:55 AM
 
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#12 of 17 Old 01-21-2011, 11:48 AM
 
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We have a Vita-Mix and make DD's formula daily. It works quite well for us and for her.

 

We usually make a batch each night (about 48- 56 oz) and store it in a big huge glass jar in the fridge. She's on bolus feeds so we just pour out what we need for each feeding (about 8 -16 oz). It lasts about 24 - 30 hours and then we make more. We also have cans of compleat pediatric formula in case we are traveling or run out of homemade formula and don't have time to make more.

 

Our formula-making process is pretty low-maintenance because we're only making a daily batch that is kept cold and gets used up before any bacteria can grow. We just throw in what we think is a full day's worth of food for a 3 year old and whizz it up. For example, we might throw the following things into the mixer: some cereal, soymilk, berries (breakfast) + banana (morning snack) + can of soup, lettuce, tomato, dressing (lunch) + carrots, bell pepper slices, cheese slices, ranch dip (afternoon snack), spaghetti w/ meat sauce, green beans (dinner). We also add a bit of prune juice, more soymilk or rice milk or cow's milk or whatever, and lots of fruit juice. We slowly dial it up to high speed and let it run for a while (like, 5-7 minutes) so it all gets really really pureed. We throw everything in there (except bones!) and feed her whatever we're eating for meals. We do have to be careful not to let the mixture get too thick (beans, bananas, rice, pasta all make it pretty thick) or the Vita-Mix will seize up (and the formula won't push through the tube anyway). If that happens, we just split the mixture into two batches and thin it with liquid (and give her a bigger bolus since the formula is diluted).

 

She is slowly gaining weight. We could probably beef it up by adding more oil to the formula. Or using cow's or goat's milk more often (but that makes DD snotty, so we tend to avoid it). 

 

I think a Vita-Mix or BlendTec is essential. Regular blenders will burn out right away.


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#13 of 17 Old 01-27-2011, 05:24 PM
 
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g-tube over ng tube any day BUT mic key button is the BEST of all

good luck Momma


: wife to DH, mom to DD (2004) DS (2005) DS (2007) DS (2009)

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#14 of 17 Old 01-27-2011, 06:47 PM
 
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Quote:
Originally Posted by Earth Momma View Post

g-tube over ng tube any day BUT mic key button is the BEST of all

good luck Momma



no dude, the AMT mini-one button is WAY better than the mic-key IMO. But I prefer any kind of long tube instead of a button if you're using it a majority of the day. The extensions are annoying to deal with if the kid is just going to be hooked up all the time. We've had Mic-key long tubes, mic-key buttons, mic-key GJ long and button, depezzer tube, foley, bard straight tube, AMT mini-one, and a chait button (appendicostomy).

 

-The mic-key button annoyed the heck out of me and broke all the time.

-The mic-key long tube was very nice (but again, if we weren't using his tube all the time it probably would have been annoying because of the length) and since it doesn't have the same things the button does, mainly the anti reflux valve, it doesn't break nearly as often.

-The AMT mini one is much less bulky than the mic-key button and has held up much much better. I think we've had the same AMT button for 5 months now and it shows no signs of wear or anything. The AMT extensions are a much higher quality too and don't kink as much.

-The depezzer tube is annoying, doesn't have a cap, and is prone to cracking after a few weeks.

-The bard straight tube does not have any kind of anchor (this is what we use for L's J tube) so it has to be taped in. It's kind of annoying to have to always do tape changes, but it's much better than the risks of the roux-en-y surgery (you can use a balloon or non balloon button after that one). The only real weakness we've found is where the port head connects to the tubing, if the tube gets pulled and/or twisted often it begins to leak. It's the easiest tube to change because it doesn't have any kind of ridge like a tube with a balloon, so it slides right in easily. 

-The foley's are okay but they also have to be taped in. They do have a balloon to hold them in place to a degree, but have to be taped. They just don't seem to be designed for long term use and we have had issues with balloons popping rather quickly. I think they lasted about 1 month max.

-The chait is fine, very low profile. It doesn't have a balloon, instead it has a coil inside that holds it in place. It's made specifically for the colon, so I don't know that it could be used anywhere else. The cap is very tight so it can be hard to open and close (not to mention that poo is often squirting out at you when you're trying to shut it, so that could contribute to that issue, lol!).

-The mic-key GJ long tube drives me batty. We went through about 1 a month because they would crack where the port head met the tubing. Kimberly Clark said that it wasn't their tube that was an issue but it was from high gastric pressure. In retrospect, this may be possible (at first I thought they were full of crap) because his stoma was not in the correct place and so the G portion was actually in the duodenum. I don't know if that could have caused the cracking or not, but it was a very frustrating problem since it has to be placed in interventional radiology.

-Mic-key GJ button I hated. I think ours most often lasted about 2 weeks. They tended to spin and displace the J portion of the tube. He also had issues with his stoma because of the bulk of the button (since it has 3 ports it's really big). He would blow a lot of bile and junk out around the stem of the button and it just ate his stoma up.

 

So there's my very long winded summary on all the different tubes we've tried (we did trial an experimental tube too, the ELF but I don't remember much about it so I left it out). I'm very pleased with the AMT mini-one and the bard straight tube is fine and gets the job done and is easy to replace. I don't think we'll ever change brands of buttons and I think this is the only button style g-tube I'll use. If we had to switch back to mic-key for any reason, I'd go with the long tube.

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#15 of 17 Old 01-28-2011, 09:17 AM
 
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I loved the AMT mini button too! We used it before we got the GJ, and as a gtube, it's excellent, much better than mic-key imo.

But it doesn't have a J, or at least not here yet.

@MotherWhimsey, do AMT mini make GJ balloon buttons in the US yet? (If you know.)

That's my dream.

For now, Mic-key is the only available GJ balloon button here, and I don't like the long GJ's at all, I want the button and balloon. But we haven't had troubles with the mic-key GJ balloon button either. It's just that I prefer the AMT's.

But for a plain gtube, I'd go with the AMT mini balloon button for sure, as I said, we loved it.


-pixie, my dear, and (A-88), N-98, Littlest-06/00-08/00, J-03 & Little Miss Cotton Ball Button-03 (SN), S-05, Hope-loss 09/09, Bean-loss 04/10, and littlePopcorn due feb. 8th -11.
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#16 of 17 Old 01-31-2011, 11:38 AM
 
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I also much prefer the AMT mini one to the Mic-Key, and I definitely prefer a g to an NG.

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#17 of 17 Old 02-08-2011, 08:30 PM
 
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I agree with the G being much better than the NG.  We've only done the PEG tube and Mic-Key so I can't really speak to preference of types.


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