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11-21-2017, 10:34 PM   #1
coolbeans
 
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NG tube assistance

I need to vent b/c I am losing it over here. My 13 yo d has an ng tube that isn't removed unless she gets sick & it comes out that way. This time she adamantly refuses to put it back in. We have tried talking, bribery, reasoning & it's not cutting it. Short of hog tying her & making it happen ( which I really don't want to do) what can I do? Do I just sit back & let her get back in the shape she was in before (56lbs & 2 week hospital stay)? I know it's working (20lb weight gain plus some height) so I hate to just give up. I am stressed over this & so is she.
11-21-2017, 10:46 PM   #2
my little penguin
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Does she have a psychologist?
If so call asap
If not call the GI office they should have one in staff for her to chat with
Is the GI adamant she use the tube ?
If I would strongly suggest she call /explain why she won't put in the tube to her GI
Why she knows more than the GI
Does she not want it at school?
Can she put it in over night and pull it innthe morning ?
So no school issues
Honestly I could see not wanting it on your face
Being a teen is hard
Having a chronic illness is hard
Having an ng tube stuck to your face as a teen where kids can mean ...
so ask what about it bothers her
What she can tolerate about and can't
Is it long term or just to put on weight
Can she drink orally the same amount
She may be motivated to try more now


Ds was when it was neocate jr
Did not want a tube
So he half gagged on neocate jr
Until he could drink it
Did 64 oz a day for a while
Now only drinks 32 oz

Good luck
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11-21-2017, 11:02 PM   #3
coolbeans
 
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She sees a therapist locally but not sure if it's helping-- her GI office is 2 hours away.
GI suggested tube for growth so she wouldn't miss the puberty window
School stinks--she says she has no friends & no one talks to her. Kids are so mean.
She won't even try to insert--says it's too hard & it hurts.
She has zero tolerance gag & wont drink it.
11-21-2017, 11:07 PM   #4
Maya142
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My daughter had the same issues - she absolutely REFUSED an NJ tube (which goes further in than an NG tube - to the jejunum, the small bowel, so has to be placed by interventional radiology). An NJ tube has to stay in all the time and she HATED it. It was uncomfortable and she did not want to go to high school with it.

She fought it and fought it and got down to 82 lbs - about a 25 lb weight loss. She was so underweight, we were told her organs could start failing if she lost anymore.

She was basically unable to do anything - forget school, she was pretty much in bed all day.

She developed Refeeding Syndrome (which can cause fatal arrhythmias) and electrolyte issues that lasted for months.

She was seeing a psychologist and eventually she understood that she was very severely malnourished and there was no way she was going to be able to gain weight without the tube. Her psychologist was a huge help with getting her to accept the tube.

Hearing and understanding how serious being malnourished can be was also a wake up call - when she heard from multiple doctors how it could affect her organs, she agreed to the tube.

Her GI also insisted she needed the tube, but that seemed to backfire at the time, the more she insisted, the more stubborn M got. M was 18 at the time, so all the decisions were hers to make.

I would definitely see if there is a psychologist your GI recommends. And I would ask the GI to talk to her and explain why she needs it.

Since she has an NG tube, I would also see if she'd be willing to insert it every night. My daughter did not mind the NG tube because she could insert it every night and pull it out in the morning. It was thinner than the NJ tube and more comfortable, and best of all, no one at school had to know.

It was MUCH easier than she expected it to be. She could do it in seconds within a week.

Her GI did not really give her a choice - the choice was either drinking the shakes, which she tried and could not do, or a feeding tube. It was like medication - not something she got to negotiate with.

Of course, all that changed when she turned 18 and could negotiate everything but you have a few years before that happens!

I would try to find out WHY she hates the tube and then figure out how to help her deal with it. We may have suggestions...
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-21-2017, 11:19 PM   #5
Maya142
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Few things - what size tube does she have? She should have a 6Fr - which is tiny and thin and flexible like spaghetti. That should not hurt being inserted. The first night when the nurse did it, my daughter also thought it hurt - a LOT. She was NOT happy. Her nose was sore and her throat was sore.

But the second night, she did it herself and it wasn't so bad. Every day, it got a little easier.

She also learned over time that it was easier for her to use her left nostril vs. the right. We later learned that this is common because many people have a deviated septum. She mostly used the left side after that.

So she should try the other side if she's only tried one side. Also use plenty of lubricant and have her drink water as it goes down. It should slide right down.

There are lots of videos on Youtube that she can watch. I promise once she has done it for a few days, it won't seem so bad.

As for a psychologist - we travel to our children's hospital to see one. My daughter tried two local ones without much luck. Her psychologist, who she has been seeing for 5 years now, specializes in kids with chronic illnesses and works in the GI dept. It made all the difference.

She may not need to even see a specialized psychologist long-term, it could just be a few sessions. It's about an hour and a half for us to drive, but it's worth it.
11-22-2017, 01:54 PM   #6
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thanks mlp & maya142 for replying

she has a 8FR--we started with a 6 but it would come out if she sneezed wrong so we moved up to the 8 & it has worked well.

I have told her that she can take it in & out so she doesn't have to wear it to school but she wont even try--it is so frustrating. she gets something in her head & wont let it go for anything. the last time we had to put it in, we had some friends assist (she had had a tube for 15 months)--R helped a little but she was so proud when it was in--I told her that it would get easier each time but she refuses to even try. I was so upset last night when I posted but after reading your comments I felt better, not so alone. My approach tonight is going to be: I will do it if you will & I will wear it too if that will make you feel better--maybe if you cant beat em, join em. And if that don't work, then she is going to drink the formula--bet she will appreciate the tube then.

I am definitely going to contact the GI about talking to someone--she goes back for labs Monday so I am hoping they have someone available then. Wish me luck.
11-22-2017, 03:37 PM   #7
Maya142
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The 6Fr was MUCH more comfortable for my daughter - and I bet it would be easier to insert too. That might be a trade-off that is worth it - more comfortable tube that might slip out a little easier. If it's not in all the time and she's asleep most of the time it's in, it'll be more likely to come out anyway.

We had maybe one or two times were it came out at night. And it's so easy to insert.

M got so comfortable with inserting that she honestly considers it a cool party trick . When she was in pediatric pain program (which was inpatient) she wanted inserting an NG tube to be her talent for the talent show! It became so easy for her that it was like second nature.

Eventually we did move to a J tube because it was clear she'd need a tube long-term. That is also something you can discuss with your GI - if it's for the long-term, a G tube is not a bad idea. It is a surgery, but it's a minor surgery. Most kids are only in the hospital a night or two. And once it is in, it's very easy to deal with - you change it once every 3 months at home. And no one has to know it's there - they have very low profile buttons now and you would never know that M has one (actually 2 - she has separate G and a J tubes) unless she showed you.

When she goes to the beach, she wears a tankini and literally no one knows. She MUCH prefers having a tube in her stomach to a tube in her nose. But for her it made a lot of sense because we knew she'd need it for a while.

Again, it's something to talk about and consider especially if your daughter will need tube feeds for a few years.
11-22-2017, 03:49 PM   #8
Maya142
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Also, after my daughter spent three months trying to drink the formula, she REALLY appreciated the tube!! She says she will never ever go back to drink formula - especially elemental formula (Neocate) which is just nasty.

If she does want to try drinking it, cold formula is easier to drink and some kids find that drinking out of a cup with a lid (so they can't smell it) and with a straw helps. Generally Boost and Ensure are considered the most palatable but also the hardest to digest. Then come semi elemental formulas like Peptamen Jr and Pediasure Peptide, which some kids are able to drink.

Finally elemental formulas which are easiest to digest but VERY tough for older kids to drink - according to my daughter, they taste disgusting (I believe she said that Neocate unflavored tastes and smells like feet !!).
11-22-2017, 04:43 PM   #9
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I think we still have some 6Fr laying around so we may try that if it would make her more comfortable.

She cant do the Peptamen but she has been getting the Neocate thru the tube & it really stinks when mixing it up. I don't believe she will be able to do it but we shall see.

I spoke to the GI office & they have a coping clinic for patients but appts are limited, of course. They were going to check & get her one scheduled. Fingers crossed it will be soon.
11-22-2017, 05:13 PM   #10
Maya142
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Glad you made some progress!! Please tell her that my daughter had a BAD first night - said it hurt and her nose hurt and her throat hurt and she hated it but within a few days it got much easier.

I bet if you can convince her to try it for two weeks, she'd be on board by the end of the two weeks.

For the NJ tube, which had to stay in, we bribed. It's not something we usually do, but she was so underweight and so sick and so miserable and we were so desperate to get her to cooperate.

Anyway, she ended up with a kitten at the end of the 3 months with the NJ tube!
11-22-2017, 06:52 PM   #11
my little penguin
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Our GI let Ds taste every kind of formula
Neocate jr vanilla or unflavored were not worth it per Ds
They tasted horrid
He is ok with the chocolate
Almost got sick on the "tropical" version

Eo28 splash are elemental but taste better per most kids
They come ready to drink in a juice box


Some kids prefer elecare jr vanilla
Ds hated it as well

Very cold with a lid and straw
Always a straw
11-22-2017, 06:59 PM   #12
Maya142
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We made Neocate as cold as possible - tried chocolate, vanilla and unflavored with chocolate and strawberry syrup. We tried Elecare Jr vanilla and Neocate pudding. She hated them all. We even made Neocate slushies by adding crushed ice, and that helped a little because it was so cold that she couldn't taste it as much.

She tried one of the EO28 "juice boxes" but could not get it down.

She was able to get a little bit of the chocolate Neocate Jr down, but nowhere near enough to maintain weight, much less gain.

Getting her to drink them was so painful - for both me and her. But she was trying her hardest not to need the tube, so we stuck with it for several months. But in that time she got sicker and sicker and lost more and more weight.

In hindsight, we shouldn't have waited that long, but it was a tough situation because she had turned 18. I didn't know how serious being malnourished was and neither did M - I feel like if she had understood the consequences better, then she would have cooperated earlier.

I'll tag some more parents who have kids with tubes - Tesscorm, pdx, Clash, Farmwife, Kimmidwife

Good luck and fingers crossed for your girl!
11-22-2017, 11:17 PM   #13
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Hallelujah it's in & she did it herself!!!!!! However, I put one in first & let me tell you, it is some weird sensations going on. I feel like this will be the best Thanksgiving diet aid ever!!!!!!!!!!! Hey whatever it takes sometimes.
11-22-2017, 11:48 PM   #14
my little penguin
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That's so great !!!!!
Wonderful news
11-23-2017, 12:07 AM   #15
Maya142
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Way to go!! Tell your DD that we are so impressed !!

And kudos to you for doing it with her - what a great idea!

It does feel weird according to my daughter - not painful, but the sensation takes some getting used to. But once she gets used to it, she won't even really notice it.

Did she try the 6Fr or did she stick with 8Fr?
11-23-2017, 01:11 AM   #16
pdx
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What great news! I'm super impressed by both of you! Do you think she'll take it out every day now, or does she still want to leave it in all the time?
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
11-23-2017, 08:10 AM   #17
coolbeans
 
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We only had the 8F here so that's what we went with. I am going to highly suggest she take it out& put it back in at night b/ c I think that wearing it to school is what bothers her the most. Now that she has actually done it herself, maybe it won't be such a big deal. Idk how long I am stuck with it--ha!! The things we do for our children. I hope you all have a blessed Thanksgiving.
11-23-2017, 08:42 PM   #18
Maya142
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My daughter thinks you are the coolest mom ever for doing it with your kiddo!!

I hope she will start inserting it and pulling it out in the morning- honestly, it is so much easier socially. My daughter was also really self-conscious about having the tube in all the time, and that was as a senior in high school. I'm sure it's much worse in middle school.

Fingers and toes crossed!!
11-23-2017, 10:49 PM   #19
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That is so sweet of her to say. It has really given me a new appreciation for what these children go thru. They are very brave & I admire them so much for all these horrid diseases put them thru.
11-24-2017, 11:19 PM   #20
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Sorry late again!

I second the coolest mom ever! I don't know if I could even stomach it.

Grace had her ng tube for 6 months but it started messing with her sinuses.
And seeing as it would be a long term issue we went with a g-tube.
Best decision ever.
Now, 5 years later, we're so glad we opted for one.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
11-25-2017, 05:00 PM   #21
Tesscorm
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Sorry I'm so late to this! But glad you've gotten through the worst of it (hopefully!).

I second all that was said above! 6fr is much easier to insert. My son inserted and removed his tube every night for approx two years. And, as Maya said, it became a 'party trick' - when his friends slept over, they'd want to watch him do it! (boys... ) It truly did become second nature to him, he'd insert the tube in seconds.

And, I am in awe of you! Wow!!! You're a great mom for doing it with her!

I hope she's decided to try to insert/remove each day... I can't imagine how hard it would be to be a teen and need to wear the tube every day. While using the tube may be not avoidable, not needing to wear it during the day would make it easier.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
11-26-2017, 12:24 AM   #22
coolbeans
 
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Ok so today she took hers out after meds this am; however I get to keep mine till we go get labs Monday then this bad boy is coming out in the parking lot!!!!!!!!!!!! She had a friend stay over tonight so she put it back in to show off for her. I get lots of odd looks & stares. I am learning to stare back till they get uncomfortable--idk what is wrong with some people?? Haven't they ever seen a grown woman with a cupcake sticker on her face?? We are going to see Christmas ice sculptures tomorrow so I will let you know how the ogling goes. Haha!!!
11-26-2017, 04:57 AM   #23
Maya142
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My daughter hated the staring too. People really do stare!! But she did also get some special treatment - there was one bakery that knew she was trying to gain weight because the owner asked about the tube. After that, she gave M free cookies!!

She used the stickers too but only certain ones - the cupcake was considered too babyish .

So glad she is doing better with inserting the tube. If you ask your DME about 6Fr tubes, I bet they could get you some. As long as you tape them well, they don't come out at night - at least, that was our experience.
11-26-2017, 02:18 PM   #24
Tesscorm
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I don't recall the tube ever coming out accidentally at night with S?? He did use tape to attach tube to cheek area and then looped the ng tube over his ear. We'd then use a medium sized hair clip to loosely hook the tube to his t-shirt (around front of shoulder area).

I think they only problem we had at night was the NG tube disconnecting from the pump, and then continuing to pump the formula onto bed/floor while S was sleeping. Very messy!!
11-26-2017, 04:07 PM   #25
Maya142
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I think my daughter only had it come out once or at the most twice. I know it was with the NJ tube because we had to go in to interventional radiology and get it replaced.

We would just tuck the tube behind my daughter's ear after taping it to her cheek with two layers of tape. We used Hypafix tape and the Feedie Friends stickers.

We also had several times where the tube became disconnected from the feed bag and so the pump fed the bed/M's hair. Like Tess said, very gross and messy!! There are clamps to prevent that from happening though, if it happens a lot. Also, there are new EnFit connectors that are being rolled out that will screw together and shouldn't come out as easily (you may already have them depending on where you are, we haven't gotten any yet).
11-26-2017, 05:21 PM   #26
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I use 1/4inch steri-strips at work(usually 2). The threads are strong and work well.
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Mom of Lincoln (age 11)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
11-27-2017, 01:58 PM   #27
coolbeans
 
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She let me take it out yesterday morning before we went out---I have a permanent indention in my face & not a hair left on my cheek. I may be the bearded lady (on one side) when this is all said & done--haha!!

We had labs done this am & she was so excited to tell the nurse what we had done & show her pics.

thanks for all the comments & support--I am glad I was able to at least walk a little in that part of her world.
11-29-2017, 10:13 PM   #28
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Surprise surprise she won't even try to put the tube back in. I am so mad 😡. We have a dr appt tomorrow so we will be discussing our other options. I hope they can get thru to her b/c I have about had it.
11-29-2017, 10:31 PM   #29
Maya142
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Would she consider trying it with a thinner tube? The 6Fr? My daughter found it much more comfortable.

If she's going to need it for a while, I would seriously consider a G tube. It is a surgery, but it is not too bad. It's often done by an interventional radiologist. Usually 24-48 hours in the hospital, sometimes a bit more. The first week was tough, but after that it got easier. My daughter went away to college 2 weeks after the surgery and she was mostly recovered.

It was VERY worth it for my daughter. Having a tube in her stomach is SO much easier than having one in her nose. Plus, no one has to know at all, so it's socially much easier.
11-29-2017, 10:47 PM   #30
coolbeans
 
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i think the g tube may be the route we have to take. I plan on approaching it tomorrow with the GI & get her opinion. We are on no maintenance meds right now & she has been home sick for the last three days with what may be the start of a flare. We are supposed to be getting a second opinion in Cincinnati as to how we need to proceed. Stelara has been mentioned & also a redirective surgery?? That would allow her gut to rest. However they can't get us in up there till feb!!! I am feeling very anxious. Prayers appreciated.
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