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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Giving up EN too soon?


10-15-2012, 03:01 AM   #1
habbymomma
 
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Giving up EN too soon?

I'm afraid that my 15 year old son is going to give up on EN too soon. He is newly diagnosed with Crohn's, has been in the hospital for 2 weeks on TPN. Was doing well on clear liquids so they dc'd TPN and started EN by mouth. He needs 7 cartons of Boost Plus/day and 20 ounces of water for 8 weeks. Day 1 he had 5 cartons and some water; day 2 drank too much at once and got nauseous, so ended up with maybe 4 cartons. Doctors convinced him to try NG tube. Initial insertion last night was horrendous experience and not successful with two tries. He begged us to not let them try the NG tube again, but a couple of hours later is back to saying he doesn't think he can drink the Boost. We will meet w/ doctor in the morning and I'm afraid he will recommend going to meds. I feel strongly about EN and don't want to give up. Any advice is appreciated!
10-15-2012, 01:54 PM   #2
Jane
 
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Have your son try different Boost flavors to see if he can find one he can take.

Can he switch to Ensure? Same idea to try different flavors.

I drink Ensure over ice.

Has he read any material explaining the benefits of enteral nutrition? The book by Margaret Oppenheimer - Beat Crohn's into remission with Enteral Nutrition is easy to read and lays out the science very well.

Good luck!
10-15-2012, 02:19 PM   #3
DustyKat
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Hey habbymomma,

I don't have near enough experience with EN to offer any half decent advice but their are many in the parent's forum that have had and do have kiddoes on EN!

Please have a read through this thread...

http://www.crohnsforum.com/showthread.php?t=36345

...and I will tag Tesscorm into this post.

Dusty. xxx
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10-15-2012, 03:29 PM   #4
Tesscorm
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Hi habbymomma,

I'm so sorry your son is having a tough time!!! It's so tough and unfair that they have to deal with these problems and overcome the treatment challenges!! My son was diagnosed just shy of 17, and he did EN for six weeks (May-July 2011) and it has continued to be his maintenance treatment (no meds) at 1/2 dose plus a regular diet!!

Please read the thread Dusty linked above. I won't repeat all the same info that applies to my son, Stephen, but will try to give just a bit more info (sorry, have to run in a few minutes but will come back on tonight if you need more info before tomorrow...).

- make sure the NG tube they used for your son was 6-Fr, apparently this is infant-sized, so very thin but has done the job for my son for over a year!!

- my son inserts and removes the tube each day. Although he learned to do it fairly easily (and, everyone is different!), if your son can learn to do it, let him know that within a week or two, it was literally taking my son only seconds to do in the evening.

- My son has the choice of drinking shakes, his preference 100% is to use the tube - no bother drinking something he doesn't like and no bother needing to drink a 'minimum' amount! He has also taken the tube with him for an MRE to use to drink the contrast fluid (it is truly that easy for him to now insert the tube!).

- My son regained 10 lbs while doing exclusive EN, and then another 20 when he reintroduced foods. He has recently been interested in 'bulking' up his muscles (a 'guy' thing ) and truly believes (right or wrong??) that the minerals/vitamins he is ingesting (due to the easily absorbed forumula) every day is what has helped him 'bulk' up so quickly (this may be a 'motivator' for your son ).

- His symptoms and diagnosis are already so very much for your son to accept and deal with, so I don't want to encourage you to put more 'pressure' on him but, do make sure he understands that the alternative will be steroids, which will come with its own side-effects that he will probably not like. (EN does have its own hardships - if he has it overnight, there will be some hunger to deal with during the day but, really, if he can learn to insert the tube, that truly will become the easiest part!)

- Unlike steroids, which cannot be quit if he decides he doesn't like the side effects (steroids must be tapered down over time), if he tries EN a bit longer, he can always go to the steroids, if necessary.

I'm sorry if this post seems jumpy - trying to get as much in as I can in a few minutes ... Please feel free to ask any questions and I will look to see if I can answer any questions for you later.

Good luck!!!
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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
10-15-2012, 05:24 PM   #5
habbymomma
 
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Thanks very much to you all. He was vomiting today and they restarted the TPN. We will be making these decisions and it is good to have input from those with experience. I am very grateful!
10-15-2012, 05:41 PM   #6
imaboveitall
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HI habbymomma,
Hard to add to Tess's post as she covered it all perfectly.
I shall add this, though, that in Violet's case, (she's used EN via NG for four years now) she absolutely CANNOT insert the tube in her left nostril; it will not go in.
However, it takes literally ten seconds to insert in her right nostril.
Perhaps the answer is that simple for your fella? I wish so.
I can tell you that she/I would NOT do without it; it was her ONLY treatment for three years, no drugs at all. Growth/development has always been stellar. She was 55in/59lbs at dx and four years later is 64.5in/142lbs.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
10-15-2012, 06:42 PM   #7
Tenacity
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I just want to add some advice - do not try NG tube feeding with those thick hard tubes they use in the hospitals. Ask for something like this:

http://www.firstoptionmedical.com/Ke...c=5&zmap=35349

Kendall is a good brand - use the 6 to 8 inch french tube. It is as tiny as the inside tube of a pen, and very soft and flexible. Also, once you start the NG tube feedings, if he has a runny tummy, try turning the rate down on the pump and start off real slow. Increase as tolerated.

Also, if you are going to the length of doing NG tube feedings, you might as well change the formula to something that is amino acid based enteral nutrition like:

http://www.nestle-nutrition.com/prod...1-b3e8895bcb64

There are formulas like these that have been especially created for gi impaired patients. Boost and Ensure have a lot of sugar in them (and anyone who believes in the SCD diet knows to avoid sugar if you can).

I hope he feels better soon!
10-15-2012, 07:11 PM   #8
imaboveitall
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Tenacity, YES, I forgot to mention that Violet, like Tess's Stephen uses an INFANT sized tube, 8fr, 36in long. It's aprox the diameter of a piece of cooked spaghetti. Maybe these kids who are having a hard time inserting are being given huge tubes to try.
10-15-2012, 07:34 PM   #9
habbymomma
 
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All great info. Thanks!
01-03-2014, 09:12 AM   #10
Emmy
 
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Being able to drink enough of the EN drinks does seem to be a major issue... having to down 7-8 200/250ml drinks through a day is hard. Doing 7 Fresubin a day was well nigh impossible for me, it made me bilious and bloated and feel awful. But you'd have to be awake all day if you wanted to sip them truly slowly... I can't see any way of drinking that much otherwise....
01-16-2014, 10:33 AM   #11
Lady Organic
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How is your son doing?

on youtube, there are a few videos of KIDS showing how to insert naso-gastric tube. They are very candid and friendly. I watched this 10 year old girl and another teenager. I find it highly encouraging to see these kid's tutorals. maybe it could help kids or adults to not give up and try again in case of failure or discouragement.

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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
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