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Discussion Starter · #1 ·
My 3yo has had a NG tube for a little over three months. She receives a semi-elemental formula at night and her meds by day. It's Vital Jr. in vanilla...it does not taste *that* bad! No worse than regular Pediasure.<br><br>
Her GI said in January that we should start encouraging her to take the formula in a cup so we don't need the NG indefinitely. She was supposed to be able to discontinue the tube by now *if* dd would drink the formula willingly.<br><br>
This has been a tough road...basically she refuses to drink it.<br><br>
Last night we had to pull her tube because the skin on her cheek had totally begun to break down. It's awful...her skin was actually peeling off with the tape! I'm afraid she's reacting to the tape we're using and we've already had to change several times. There literally isn't anything left we haven't used.<br><br>
She really didn't want us to drop a tube on the other side. And we didn't want to--worried that her other cheek would get as irritated as the first. (Strangely it had been fine for weeks and then in a matter of one day got very red and started blistering.)<br><br>
After a long discussion, she promised to take her "special milk" in a cup and meds by mouth.<br><br>
But now she won't. She just absolutely refuses. I put ovaltine in it, I made sure it was chilled. She takes one swig and refuses more. She also refuses to take her medicine. I can't even get her to open her mouth.<br><br>
She's very bright...I can totally have a normal conversation with her. She has all sorts of reasons why she shouldn't have to have that medicine or drink that formula. And when I try to tell her she needs it or she'll be sick, she gets really emotional and starts talking about all her hospital experiences. It ends with "I don't want to do this right now...please let me go play, mama." which breaks my heart!<br><br>
What should I do? Should I withhold other beverages today to see if I can force her into drinking the milk? Go back to holding her down to force the medicines down? (Which is what we HAD to do pre-NG.) Should I just replace the tube and hope for the best with her skin? She needs the formula and medicine....and she can't have an NG forever. And I'm not interested in her having surgery and the scarring of a more permanent solution at this point...she's doing well and the NG is well-tolerated. But it's supposed to be temporary, for when she won't eat at all, etc. I am not sure what to do.<br><br>
P.S. She doesn't need the formula for nutrition or weight gain at this point...she's actually quite overweight. We're continuing it because it seems to help her UC/Crohn's.
 

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Hugs. I would not withhold or force anything. That just goes against my spirit and the way I feel about raising my children. Has anyone discussed oral aversions with you? They are telling you to use the NG to solve one problem but it may very well be making things worse. If this creates an oral aversion she may become so upset that she refuses all food and drink and then you will be forced to do a g-tube or TPN. She is at an age where she needs to feel in control of her body and what goes in and out of it. Is it possible to trust her and take a break from the NG for a few days and keep a diary of what her oral intake is?<br><br>
When you need to remove tape you can get adhesive removers but what works best for me is to use Lansinoh or even Vaseline around the taped area. After a bit it will work it's way in around the tape and loosen it up and then you can remove it. Then coat the sore area with Lansinoh and rotate to a different site.<br><br>
I do want to give you a link that has helped me with tube feeding information and support. The mamas there are very knowlegeable. My son has a g-tube because he is unable to eat orally at all.<br><br><a href="http://www.parent-2-parent.com/forum/forumdisplay.php?f=8" target="_blank">http://www.parent-2-parent.com/forum...isplay.php?f=8</a>
 

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Discussion Starter · #3 ·
I'm not comfortable with witholding or forcing either. It's not the way we usually treat our little ones. Pre-tube, we HAD to force her to take her medicine if she didn't agree. There just was no room for her not getting it in. It was either that or she'd be dying or very minimum, back in the hospital (which she hates) getting multiple IVs, which is no picnic!<br><br>
But at this point, we can choose to continue the NG, as long as we can figure out how to keep her skin on her remaining good cheek in tact. So I think as soon as dh gets home, we'll have to put "tubey" back in. She doesn't want that either, but she's on several medications that aren't optional.<br><br>
Thanks!
 

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this is why I always hated the NG. Really, the G-tube isn't a big deal. It's much much easier and less noticable than the NG. And if you have it done endoscopically the scar will be about the size of a pencil eraser diameter when the tube is taken out.<br>
I know you don't particularly like that option though. The only other thing I can think of is hypafix or hytape to tape with. And we were told to always rotate the nostril every 2 weeks at least or it would cause issues. I don't remember what those issues were though.<br>
I hope you figure something out soon, tape issues suck.
 

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I'm surprised that they're telling you not to rotate. Dd had an NG tube for a year, and we rotated every time it was changed. It actually helped with the skin breakdown a bit because that skin got a break. We also discovered that dd was allergic to the tegaderm, so you might try either the hypafix or we now use sorbaview, which helps.<br><br>
I agree with the pp's in that forcing the issue may cause some long-term issues. Oral aversion, as I'm sure you already know, is such an awful thing to deal with. Does she tell you why she won't drink the formula? Could it be that it makes her feel too full, or that the texture bothers her?<br><br>
The NG tube is really supposed to be a temporary solution (something I wish I had known). Long-term use can cause damage to the sinuses and nasal passages, and can interfere with the child's willingness to eat orally because of the sensation caused by the tube in the back of the throat. It can also aggravate or cause reflux, since the tube essentially holds open the sphincter at the base of the esophagus.<br><br>
Can she take the meds disguised with food? Dd will take most of her meds orally, but one of them is so awful and causes mouth sores that she just won't. She's had a g-tube for a long time and while she doesn't need it for nutrition (like yours, she's actually slightly overweight now), she does need it for fluid and meds, and I'm happy to have it.
 

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I would be fighting for a g-tube honestly. We tried the withholding thing when we needed DD to wean from BFing to her elemental, and she flat out refused to the extent it was nurse or go for IV rehydration (18 hours). We did a week inpatient with NG and then went G. DD's skin was sensitive at the time, but now if we put any tape around her g site, she gets tissue break down and bleeding so I'm glad we didn't persist with the NG. We were told that for treatment lasting longer than 3 months, g-tube was the only option (From our GI's perspective). If she is probably going to need a semi-elemental on and off through out her life, a g tube would be my first thought since they can last indefinitely, are not horribly obtrusive, don't stop normal activity, and can be used for many nice things (tube puking, meds, rehydration during illness, gas w/o gas pains, etc.). I'd call the GI about it if I were in your shoes. Check out <a href="http://www.parent-2-parent.com" target="_blank">www.parent-2-parent.com</a> if you aren't a member. They have great tube feeding info
 

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Discussion Starter · #7 ·
Thanks for the replies! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br><br>
We do usually rotate every couple/few weeks but the last few changes we couldn't get it in the other side.<br><br>
We did finally manage to get it in the other side that evening though and it's been fine since. She can't take her iron orally w/o gagging and her other meds are not much better for her....she has 4 liquids meds right now. The NG doesn't inhibit her eating thankfully. I give her a little water as well when she begins to get constipated.<br><br>
I'm not sure if our GI has considered a g-tube yet. My thinking is she'd want to wait till K is sick and needs to go inpatient anyway. I'm not sure we would want to get one now, while she's doing well and enjoying a few months' break from the hospital! w will see the GI next week and discuss.
 

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They actually only require a 24 hour stay for most who are already NG tube feeding. But I personally won't do an NG tube at all longterm...AS in demanded not to go home with one in the hospital. Told them it was a g-tube or no tube at all. Got the g-tube. So I'm biased there. I refuse to put one back in a couple times a day and the damage that would go along with it...and thats what we'd have so we're colored by that.
 

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My dd was home from the hospital and playing 36 hours after her gtube placement. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> It's a very easy procedure for most kids. Anyway, good luck with everything!
 

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Discussion Starter · #10 ·
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<div>Originally Posted by <strong>Kierdan'sMom</strong> <a href="/community/forum/post/10736153"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">They actually only require a 24 hour stay for most who are already NG tube feeding. But I personally won't do an NG tube at all longterm...AS in demanded not to go home with one in the hospital. Told them it was a g-tube or no tube at all. Got the g-tube. So I'm biased there. I refuse to put one back in a couple times a day and the damage that would go along with it...and thats what we'd have so we're colored by that.</div>
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It's good to know it wouldn't be a long stay, but seriously, I don't want her to have to go there at all...even for a minute...while she's doing well. I want her to have a long period without the hospital since so often it's a monthly thing for us. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> Of course if something changes and she can't have the NG and we can't get meds into her at all....or nutrition....I would change my opinion on that and have her there in a heartbeat. Thankfully she's a little butterball right now and they've actually got me making sure she isn't overeating. Amazing sidenote...she went from 26 pounds to 42 pounds in under 3 months! Some of that is from prednisone but that's going away now and she's still 38 pounds.<br><br>
We do leave the tube in all the time--no in and out for us unless something happens. And we weren't inpatient when she got it, or I may have asked for the real-deal. We had it placed in the GI's office. Of course, we had some experience with one when she was inpatient after her stroke, and we said we would not admit her just to get it, so it worked out that we were able to do it outpatient.<br><br>
Thanks!!
 

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Discussion Starter · #11 ·
<div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>USAmma</strong> <a href="/community/forum/post/10737686"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">My dd was home from the hospital and playing 36 hours after her gtube placement. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> It's a very easy procedure for most kids. Anyway, good luck with everything!</div>
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That is good to hear!<br><br>
Thanks! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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Shellie,<br><br>
I think you have the right idea to do everything you can to preserve oral eating and avoid a g-tube. We have done both and while I am thankful for the technology that allows my son to eat I would never have done it if he had been able to eat orally and get enough nutrition/hydration that way. He had a stroke in utero in addition to other medical issues and then an oral aversion because of being on a vent and so many aversive early interventions that were necessary and lifesaving but could not eat, never able to go to breast at all. Saddest thing of my whole life is seeing him on a g-tube. I look back on the pics of him with the NG and that was tough too. The day we went to surgery was because he was throwing up and could no longer tolerate the NG, he was losing weight and labs were all a mess.<br><br>
I have not found it to be easy at all. He is going to take a lot of therapy to learn to eat orally and ever get off the g-tube. I anticipate it will be at least 2-3 years from what I have read.<br><br>
Hugs to you and your little girl.<br><br>
Anne
 
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