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KLB

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Reply with quote  #1 
I just have a few questions that I wonder if anyone has experience of that they could share........

Does anyone have any experiences with a nasal bridle/loop to try and keep an ng tube in better/prevent it being pulled out?

If someone were to try and pull it out with a nasal bridle in place could they badly injure themselves?

Is it bad for a patient to undergo repeated ng tube insertion?

Is it common for ng tube feeding to cause stomach pain and/or nausea?
Torie

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Hi KLB,  I don't know the answer to most of your questions, but I'm sure someone here does.  My impression is that there is a lot of variation in the level of discomfort experienced.  Once it is in place, I think some don't find it particularly uncomfortable, while others continue to be bothered by it - I think I jumped to the conclusion that it is the tube going down the esophagus that is uncomfortable (as opposed to sensations in the stomach), so I look forward to having my understanding enhanced.

I'm pretty sure some here have had repeated insertions and I don't remember hearing about any problems with that, but, again, I should let others more knowledgeable answer the questions.

Keep swimming. xx

-Torie

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scaredmom

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Reply with quote  #3 
I will answer what i can:
Bridles will help decrease accidental displacement /removal not sure if it is pulled on intentionally if there would be harm done or if significant harm would be done. Likely a bloody nose/ irritation.

Nausea once placed not common. The stomach cannot “feel” the tube. If near the diaphragm can cause hiccups
Nausea can be due to the feeds/volume and stomach stretching. Or psychological.
Repeated ng placement can be irritating to the nasal membranes and esphagus and repeated attempts may cause the tube to be placed on the larynx trachea and this is dangerous. Rare but possible.But if there are a lot of insertions over time ,watch for sinus infections, nose bleeds local irritation. Trauma from the tube and force they use

I did find a nice article and will get it posted. Food_supports d had an ng I think and Mamaroo’s too.
I am sure one will respond soon with their personal experiences. We did not have ng feeds.
XXX
scaredmom

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http://www.theajo.com/article/view/4000/4708
XXX
Sotired

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Reply with quote  #5 
My d has had repeated ng insertion and it has been fine for the first four years.on the fifth year she is getting nasal irritation.so it should be fine for your child for a good long while.
She has only had the bridle a couple of times, but when she has vomited out the tubes it has caused a problem in thst the bridle has to be cut free before the tubes can be properly taken out.if the tube has bunched in the back of the throat -uncommon but it hapoens- it will delay the ability to get the tubes out for a few minutes.that doesn’t sound long, but it feels like a long time to the person choking. However, it’s uncommon,like I said.
The ng tube causes both physical and psychological nausea.the body is getting nutrition again and it can feel yucky and over full for our kids at first. Generally this settles down in a few days to a few weeks.hot water bottles help.if there is anxiety you could try a weighted blanket,sometimes that helps.
They can be prescribed maxilon for nausea .
I hope this helps.

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Sotired42
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Reply with quote  #6 
 My D had multiple NG tube insertions. She only ever had bolus feeding whereas I think Sotired's daughter had continuous feeds. My D had fullness and discomfort with the feeds but afterwards no ongoing nausea when food wasn't going down. My D had a deviated nasal septum which caused issues with the tube. She couldn't have it in one side because it was too narrow but then she felt like her nose was blocked as only the narrow side was unobstructed.  We had issues with nasal and throat irritation from the get go. 

My D didn't need a bridle. 

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KLB

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Reply with quote  #7 
Thanks for your replies. Gives us a bit more to think about.
tina72

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"Is it common for ng tube feeding to cause stomach pain and/or nausea?"

I do not know much about tube feeding because we had none but any food at the start will cause stomach pain and/or nausea because the stomach is not used to food any more. So the secret really is distraction, distraction, distraction. Ask at what times they are tube feeding him and go there and play card games or watch TV with him while they are doing it. It will get better with every kg of food that is going into him again.

Tina72


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KLB

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Reply with quote  #9 
Card games are off the table as he can't play without wanting to include some exercise rules and gets very agitated when he's prevented from doing it.

We've tried tv/films with limited success. He doesn't seem to be in a place where distraction works currently. His mind is unable to think of anything but exercising or the lack of exercise meaning he doesn't have permission to eat/have calories. I can't tell if the nausea and abdo pain is actually real or an ED tactic. He's pulled the tube out several times at times of very high anxiety over being prevented from exercising, which is why they mentioned the nasal bridle, but I'm just concerned it won't stop him from trying to pull it out when he's really stressed and injuring himself.
scaredmom

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Reply with quote  #10 

Quote:
Originally Posted by KLB
He's pulled the tube out several times at times of very high anxiety over being prevented from exercising, which is why they mentioned the nasal bridle, but I'm just concerned it won't stop him from trying to pull it out when he's really stressed and injuring himself.


The bridle will not help with the compulsion to pull it out. It, may however, act as a deterrent.  Have you discussed these issues with the medical team? Have they any information on what would happen if he pulls it out hard- what are the "side effects" of pulling it out aggressively?

Can you try it and see?

XXX

 

scaredmom

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Reply with quote  #11 
You mention he pulls it out when very anxious, are you  able to "predict" the anxiety?Are they able to medicate him during those times? Just thinking out loud...
XXX
KLB

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Reply with quote  #12 
They said it would hurt if he pulled on it and that the pain would probably stop him but I'm not sure it would, especially when he's so anxious. If he managed to pull it out he could cause damage to his nasal septum and bleeding etc. We're leaning towards not wanting a bridle.

Sometimes I think I can predict, but then sometimes it seems to come out of the blue.

They have started him on meds so hopefully we'll start to see some difference.
scaredmom

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Reply with quote  #13 
Would they consider a short quick acting sedative prior or during stressful time? Just to help out in the moment?
teecee

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Reply with quote  #14 
Dear KLB you are being so brave. Things will start to improve for you all. I know it. Fingers crossed the meds help relieve the anxiety and he can start to heal. Xxx
kazi67

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Reply with quote  #15 
Dear KLB
My d had a NG tube for 8 weeks, my d didn’t try to pull it out, it stayed in everyday for 8 weeks until she WR and could eat all her meals/snacks independently
I tried to make her feel better by saying it was “temporary” (I work with children who have NG tubes permanently so this made sense to my d) I also would let her know, and nursing staff did too, that it was “a tool to recovery” but possibly it sounds like your s is very ill atm and may not take this on board, but you could try saying that
It is the hardest thing to see you child have, I’ll never forget it and hopefully they don’t either as my d never wants to go back to IP
I’m not sure what advise to give on the exersize compulsion except that by being IP my d couldn’t exersize, she coloured in (I’ve framed her artwork it’s just beatiful), made Pom poms, every nurse and other patient in the clinic ended up with one for a present
Board games or cards worked well as a distraction, although the first day we brought one she refused and we all sat there crying for hours eventually she said let’s play (bloody ED stopping them enjoying little pleasures grr)
Does your s collect cards of some sort, or enjoy iPad games, videos, jigsaw puzzles, crosswords, where’s Wally that sort of thing?
My d never really did in the past but we had to think of something to distract her 8 weeks IP after being a very active girl (like your s) was very hard so if you can try to think of something
It’s really really hard but it will get better 7 months after admission my d is now pretty much back to herself
I honestly never thought it would happen
My d even enjoys life without her dance, she misses it but knows now her health and well-being are more important
Don’t give up! It will take time, Stay strong and brave and kick this things butt out of your life
Thinking of you and your family
xx
mimi321

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Reply with quote  #16 
This may seem like a weird suggestion for the urge to be active, but I recall mamabear saying they would play table ping pong in the morning (seated). Sometimes my D and I would toss a soft spongy ball back and forth, seeing how long we could do it without dropping it, coming up with little challenges, like one hand only, lefthand, etc. Maybe this will be viewed as a small compromise for some activity. I don't really know his state of mind right now and whether that would be helpful and could maybe release a little tension or if it would trigger the urge to do more, but I thought I would mention it.
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Sotired

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Reply with quote  #17 
The other thing that worked ,as my d also pulled out her tube when she had anorexia ,was a watch. A person who sits with them .this goes 24/7 and is very necessary for when our kids have both exercise compulsion and pull out the ng. I’m not going to lie, anorexia hates having a watch, but it is often the only thing that helps with these behaviours and compulsions.
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debra18

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Reply with quote  #18 
My daughter never wanted to talk to me during meals. So I would talk to my other daughter, making it a very animated conversation and she would end up joining in. If you are with your husband or another relative in the hospital try having a conversation with the other person, maybe telling jokes or interesting things in the news.
midoceanmariner

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Reply with quote  #19 
Dear KLB, So sorry to hear you are dealing with an NG tube. I have no experience with the nasal bridle, only the NG tube. My daughter had a tube for 6 months inpatient and another 18 months plus at home. She got to the point where, with my support, she could insert it herself (after pulling it out or for a regular change after 4/5 weeks in). Other than irritation in the nose/throat, there was no problems with repeated insertions. If inserted correctly, there should be no discomfort but she did 'prefer' one nostril over the other. The patient has to cooperate with the NG placement, it can not be forced. By cooperate, I mean offer no resistance. It helps if they, once the tube is in as far as throat, drink water which will help the tube down to stomach. After insertion, the air should be taken out of the tube before first feeding, this helps with minimizing an 'over full' feeling or the mild stomach discomfort which comes from the system being 'surprised' food has arrived in the stomach, normally chewing and swallowing kick-starts the system.
That tube can be pulled out in a split second of impulse action! There were many times that my d pulled the tube out, a lot of crying can also make it 'fall/slide' out. We had a few nightmare occasions, but ultimately every time she would be able to put it back in. I had to wait (hours and days on one occasion - strongly not recommended) until I spotted a small break with ED and I could communicate with my daughter and I would make her understand, "tube back in or we go to emergency room where they will put it back in". That worked because she had had 'bad' experiences with nurses trying to place the tube. To be honest, I have no idea what would have happened had we showed up at the ER as, once she was wr, there would not have been a 'medical' need for it. 
Are there times (moments/seconds?) that you can communicate with your son without ED interfering?
For my d, there was a relief once there was no choice. I adapted the advice from Eva Musby's book, and created a script ('safe' 'what you need') that I repeated without deviation with every feeding or tube placement. It is exhausting and thankless, and progress is so slow you may not even see it. Just know that - from our experience anyway - despite all the resistance, your child is in there counting on you to keep going and stand up to this monster that is ED until the day he can do it himself. Wishing you courage and strength.


debra18

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Reply with quote  #20 
KLB how is your son doing? I am hopeful things are starting to get easier. I do think soon your son will be in a better state and you will be the one giving advice to others.
KLB

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Hi. We have managed to gain a kg since the beginning of the month with the ng feeding. The dietician has increased calories to 3000 a day from today so we'll see if that can get a bit more on. She wants him to be gaining a kg a week so will keep increasing calories until that happens.

His anxiety over the tube and feeds have reduced with medication and they're also giving him a mild sedative before each feed, which has really helped. He has continued to complain of nausea and stomach pain to the one nurse he'll speak to. He still doesn't talk to us or others but this one nurse seems to have built a bond with him.

We're offering meals orally but the majority of the time we end up having to feed via the ng because he refuses. The only time we didn't have to feed via the ng is when his best friend and (we think) on-off girlfriend visited. She burst into tears when she saw him and ran away. I think he ate with her when she came back to make her feel better. Almost makes me want her to visit 6 times a day but I know she found it hard to see him like that. His best friend did too. I'm just thankful he still has other people that care and haven't forgotten him.

Exercise compulsion is still rampant unfortunately. He went missing from the ward the other day and was found stair climbing again. The medications don't seem to be having an effect on that.

So, overall I'd say progress is kind of stagnant but we've stopped going backwards I think.
scaredmom

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Reply with quote  #22 

Quote:
Originally Posted by KLB
Hi. We have managed to gain a kg since the beginning of the month with the ng feeding. The dietician has increased calories to 3000 a day from today so we'll see if that can get a bit more on. She wants him to be gaining a kg a week so will keep increasing calories until that happens.

His anxiety over the tube and feeds have reduced with medication and they're also giving him a mild sedative before each feed, which has really helped. He has continued to complain of nausea and stomach pain to the one nurse he'll speak to. He still doesn't talk to us or others but this one nurse seems to have built a bond with him.

We're offering meals orally but the majority of the time we end up having to feed via the ng because he refuses. The only time we didn't have to feed via the ng is when his best friend and (we think) on-off girlfriend visited. She burst into tears when she saw him and ran away. I think he ate with her when she came back to make her feel better. Almost makes me want her to visit 6 times a day but I know she found it hard to see him like that. His best friend did too. I'm just thankful he still has other people that care and haven't forgotten him.

Exercise compulsion is still rampant unfortunately. He went missing from the ward the other day and was found stair climbing again. The medications don't seem to be having an effect on that.

So, overall I'd say progress is kind of stagnant but we've stopped going backwards I think.


So good to hear from you, KLB.
The weight gain is wonderful! And the plan to get 1 kg per week is good. So glad they can help him with some of the anxiety and feed him. It warms my heart that he has someone, the RN that has bonded with him to support him and you.
I am glad that his friend and maybe, girlfriend are there to show him what is waiting for him and that they care.

As for the exercise, it is a beast to control. But he is in the right place and they seem to be taking good care or him with the weight and meds to help. I think you are moving forwards, beautifully!

I am so happy to hear about the weight gain and less anxiety and his friends and the great plan they have in place.
I hope you are doing ok and getting rest and the support you need too.
XXX

mimi321

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Reply with quote  #23 
That is so good to hear, KLB! With weight gain will come further healing. If they have that part of the puzzle covered so that he is getting his intake and gaining regularly, it sounds like you are on a good path. It is nice that he has others who care for him, too and that he has built a bond with one of the nurses as well. I was worried the ng tube and the bridle (sp?) would be an issue, so glad that is not an obstacle. Take care. 
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KLB

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Reply with quote  #24 
We opted not to go for the bridle and he's still pulled it out a few times but it has reduced. If he pulls it out he gets 30 minutes to eat the next meal or it goes back in so he can be fed. Most of the time the struggle to eat by himself is too much to overcome the anxiety / agitation of having the tube put back in so in it goes. We're doing round the clock shifts at the hospital because they don't have enough staff for 1:1 nursing and he needs to be watched pretty much all the time to stop him exercising. We keep a log of what and how much he does for the dietician and she's added extra calories a few times to make up for it, which he absolutely hated. Had to be restrained to get that feed into him. Wasn't nice to see but I know he needs it. And it's showing the ED who's boss I guess.
Warrior1

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Reply with quote  #25 
KLB 1kg on that’s great step in the right direction and sounds like you have a solid plan for more weight gain. I like the sound of your dietitian I think that is absolutely the right thing to do to add more to compensate. Have faith that the compulsive exercise will be easier to tackle once he has more weight on. It is wonderful when they realise they can eat a meal without having to run laps to compensate. Hope his friends visit more often I think if they knew they had made a difference they would visit regularly. I asked a lot of friends parents to have D over for tea etc as she always ate better with friends around and I think it really helped to normalise eating. Keeping everything crossed for you that everything keeps going in the right direction xx
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