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08-21-2014, 09:16 AM   #1
Maya142
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EN (NG tube)

M has lost a lot of weight in the last year (about 14 pounds). She drinks Peptamen, but can only manage about two a day since they make her so full. Her GI and nutritionist have determined that she is malnourished and needs to be getting more calories. So we have finally decided that she will do EN by NG tube which she has been resisting for about 8 months or so.

Because she is so malnourished, her GI wants her to be inpatient for a couple of days to make sure everything is working correctly. We'd previously been told this could be done outpatient and M is really not happy about being inpatient for 5-7 days. Is this standard? Was anyone else's kiddo admitted to do this?

Any tips, tricks to make the experience better for her? She's very nervous and not at all looking forward to it.
We will be trying Peptamen 1.5, I read on here that sometimes kids have trouble tolerating that?

Thanks!
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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
08-21-2014, 09:20 AM   #2
Clash
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C was inpatient but not due to EN being started. His weight got low before we could getbto the appt where the nurse was going to show us how to place it. Then joint pain flared so GI admitted him. He did decide to keep him a couple days after testing and placement of tube to see if all was going properly and get him to a certain discharge weight.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-21-2014, 09:47 AM   #3
my little penguin
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1.5 peptamen is very high calorie and sometimes a slow gut can't handle it.
If she is very malnourished they have to build up slowing and watch carefully otherwise other things can happen - hence the inpatient - you can't just start at a high rate or normal
Amount of formula .


Regular peptamen is easier on the gut. The only difference is number of shakes put in .
So 1.5 would be 5 shakes vs regular 7 shakes .
If the plan is straight over night feeds then that may be why.
I would ask why the higher stuff since your pumping it in anyways and you know her system tolerates peptamen -normal .
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08-21-2014, 10:13 AM   #4
Maya142
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Because she does not want to have to do it during the day

I'm not sure how many calories she will get but it's 75% EN and 25% (I think). I think they're just trying to get enough calories in. I will ask about the regular Peptamen, but unless she agrees to do it during the day, not sure she will have enough time to do 7 shakes or so at night.

She's a senior in HS this year and is already worrying about college apps, so I don't want to try to make her do something she doesn't want to (especially since she was already so against the ng tube!).
08-21-2014, 11:04 AM   #5
Jmrogers4
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No advice since we did not do NG tube but it was really hard for its to do 8 shakes a day as we really had to schedule and as adamant add he was about not doing NG tube if we have to do EL again he wants NG tube so he doesn't have to worry about it. EL did male a tremendous difference as far as nourishment and weight gain, we were 80/20 and he quickly was back on the bmi growth charts. Hope it works wonders
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Mom to Jack (18) dx Crohn's 2/2010
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
08-21-2014, 05:04 PM   #6
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My son had the NG tube for 9 weeks. He was admitted for one overnight to have it inserted and then teach me how to "feed" him. It wasn't pleasant going in but was quite quick. He felt uncomfortable for about 2 days and after that didn't really notice it. Hope it goes well if she ended up getting one
08-21-2014, 05:09 PM   #7
Maya142
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We want a really small one right? I remember someone saying an infant sized one?

I'm pretty sure M has completely fallen off the growth chart in terms of weight, so really hoping this will help. M is mostly worried about inserting it herself.

Thanks everyone!
08-21-2014, 05:47 PM   #8
my little penguin
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Yep infant one -
There is a youtube video or two of teens inserting them all by themselves .
08-21-2014, 05:48 PM   #9
my little penguin
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http://www.crohnsforum.com/showthread.php?t=22753

Lots of info in this thread on en
08-21-2014, 05:49 PM   #10
Clash
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Yes, C uses 6FR which is the infant size And you want it with stylet not without. The guidewire(stylet) makes a big difference or did for us on ease of insertion.
08-21-2014, 06:16 PM   #11
Maya142
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Thanks, will make sure to get the guidewire/stylet. Found a couple of good videos, so she isn't so worried anymore. M will be admitted on next Tuesday (if insurance cooperates).
So she's now 87lbs, I'm hoping she'll start gaining soon!
08-21-2014, 08:13 PM   #12
araceli
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Hopefully insurance does not give you trouble and the treatment works fast.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
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08-21-2014, 10:07 PM   #13
happy
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I am asking Tesscorm to join the conversation. Her son successfully used EN with an NG tube for a long time.
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08-22-2014, 12:49 AM   #14
Twiggy930
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My son did EEN via a NG tube that he inserted himself nightly for 6 weeks. He was 10 years old at the time. Our lovely GI nurses taught him how to insert the tube in about 1 hour. I was totally amazed. He used a 6 Fr sized tube with the guide wire removed. He used a numbing gel (the kind you rub on teething baby's gums) on the end of the tube to kind of numb his nose for the first little while. He found the trickiest part was finding the right spot at the back of the nose where the tube has to make a turn down to the back of the throat. I think that it is much easier for the person having to tube inserted to do the inserting themselves, even the first time, as it minimizes the blind pushing to find the right spot for the tube at the back of the nose. After about 5 days my son could literally insert the tube by himself in 12 seconds flat. We used a very slow rate with the pump at first and slowly, over the week, increased the rate.

I sincerely hope that your daughter has the same good experience with the NG tube that my son did.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
08-22-2014, 01:34 AM   #15
Maya142
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Thanks Twiggy930 (I like the lidocaine gel idea!), M is determined to do it herself and is not so anxious anymore after watching some videos on youtube (thanks MLP!).

We were initially told M could do it outpatient in a 2 hour long appointment, but now since she's lost so much weight and is apparently "severely malnourished" (still in shock about that - no one mentioned it before today!) she has to be inpatient.
08-23-2014, 10:55 PM   #16
AZMOM
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Maya - She can do it!!!!!!!

Hugs,

J
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Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
08-26-2014, 08:52 PM   #17
Maya142
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So far so good! M's nurse inserted the NG tube today, and she tolerated it pretty well. The one thing she has been complaining about is that her nose and throat are very sore - so sore that she isn't really eating (even though she is allowed to).

The nurses keep assuring her that she will get used to it, and it's just because it's the first time. Did anyone else's kid have trouble with this?

Tomorrow she's going try inserting it herself. She is NOT looking forward to that, mostly because her nose hurts.
08-26-2014, 09:05 PM   #18
AZMOM
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Have her try the other side. They had told us to alternate but both times we've used the left, it's been painful. So out of 90+ days, only twice has she used the left. She says the right side is a better "tube side".

Claire drinks a lot with the tube in but says it feels weird to swallow food or pills so we generally don't make her.

Go, M, go!

J.
08-26-2014, 09:35 PM   #19
Clash
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C uses the right side, he said it scraped to much and made his throat sore on the left. Also, without the stylet we had a struggle the first few times at home and that made his throat sore for a couple days. Are they using the numbing gel? C used it in the beginning and I think it helped. Later he just used some type of jelly they sent. Hugs and good luck tomorrow! Glad to hear insertion went well today!
08-26-2014, 10:33 PM   #20
my little penguin
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Big hugs and cheers .
Hope the am goes better.
08-26-2014, 11:21 PM   #21
Maya142
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We'll try the other side tomorrow. We did use some sort of gel, but I guess it didn't help much. Her nose is still really bothering her, her throat not so much.

She won't have it in for most of the day tomorrow, so she'll be able to eat (thankfully). The rate is really slow right now so she actually has had very few calories today -- seems funny that she's consuming fewer calories with the NG tube in!

Thank you everyone for all your suggestions and support!
08-27-2014, 01:11 AM   #22
Twiggy930
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DS found the tube a bit bothersome for the first couple of nights. But his throat seemed to get used to it and the nose didn't get sore when he got good at inserting it, which happened VERY quickly. I really think that it will be gentler for her to do the inserting herself because then she will know when to stop pushing and how hard to push. When someone else does the inserting they have to guess at all of that. DS never ate with the tube in. He did switch nostrils every now and then. I don't remember if he had a favorite side.

I wonder if that numbing throat spray that people use when they have a sore throat would help. Maybe even to just spray it once the tube is already inserted. Never did it, just thought of it now.

Good luck tomorrow.
08-27-2014, 07:33 AM   #23
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My son had a really sore nose and throat for 2 days after but then he kept his in, so got used to it. I hope it goes well for her doing it herself!
08-27-2014, 11:37 AM   #24
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Sorry I haven't been around, major computer problems.
My girl had sinus issues with her tube. I hope it gets easier.



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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
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Ehlers-Danlos Syndrome dx (1/26/17)
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Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-27-2014, 09:51 PM   #25
Maya142
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M was able to put the NG tube in by herself tonight !!!

She was soooo relieved when she could do it, she had been dreading it all day. It's no longer sore, and she's really not bothered by it.

I think we're still stuck here for a day or two, but we're trying to see if we can get discharged early.
08-27-2014, 09:58 PM   #26
my little penguin
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Yippee!!!
For no pain and getting it in.
Hope you get sprung soon.
It may depend on her feed rate .
Sometimes they want them up to a certain rate before they can go home .
Hugs
08-28-2014, 12:18 AM   #27
Twiggy930
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Fantastic news!!! Way to go M!!!
08-28-2014, 02:30 AM   #28
Sascot
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Fab! Well done M
08-28-2014, 06:50 AM   #29
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Yay Way to go M! I hope you guys get to break out early!
08-28-2014, 09:11 PM   #30
Jmrogers4
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Way to go M
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