Crohn's Disease Forum » Parents of Kids with IBD » Diet/Cooking for Kids with IBD » Had the talk with our son about going on EN

04-01-2012, 10:29 PM   #1
Mom2oneboy
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Had the talk with our son about going on EN

We have a meeting with S's GI doctor in the morning to discuss starting the liquid feeds. Because he has had so much going on this week, we put off telling him about it until tonight. So we start off with all the reasons why he needs extra nutrition in order to continue to grow and get BIG muscles and go through puberty at the appropriate time. That by doing this it will hopefully eliminate the belly pain he has been having and allow him to continue doing all the things he loves to do. So he says, "Well, that all sounds good. How do we go about doing this?" My husband starts explaining the tube you put in the nose and how it allows predigested food to pump into to your stomach over night while you sleep. The tears start to come so we tell him that he'll be able to take the tube out every morning so no worries about having to go to school with it in. More tears so we explain that tons of children all over the world do this and that we know he can do it to. More tears so we tell him how impressed his Uncle Jamie is going to be with this new "trick" he'll be able to do and how he might also be able to gross out his friends with this skill. The tears stop. I then tell him that he won't have to worry about eating anymore. He starts smiling and says, "You mean I won't have to bother with eating dinner anymore?" Nope, no more dinner. You'll be able to stay outside and play longer, I say. "What about lunch?" Nope, no more lunch, I say. He says, "Oh that's going to be so cool. I'll tell my friends that I don't need to eat lunch anymore because I have super powers. He told me, "Mom it's going to be so nice not having you nag me about eating all the time."

S has never been a good eater! Could care less about it really. He has never been motivated by food and eating has always just been a huge inconvenience to him. We have struggled with this ALL his life. Turns out it might actually be a blessing.

He admitted to being nervous about the tube insertion and says that it might take him awhile but that he's sure he can master it. God love him and his positive attitude. He's also been promised an Xbox if he can do this so that's a HUGE incentive for him.

Soooo, we shall see how it goes tomorrow. I'm nervous but at least we're going in with the proper attitude!
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
04-01-2012, 10:40 PM   #2
Susan2
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Shelley, it moves me to tears every time I hear about these kids bravely coping with Crohns. Can you give your boy a big hug from me? (If that won't embarrass him, of course. )
04-01-2012, 10:54 PM   #3
Mom2oneboy
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Shelley, it moves me to tears every time I hear about these kids bravely coping with Crohns. Can you give your boy a big hug from me? (If that won't embarrass him, of course. )

Aww, Susan thank you! He's a huggy kind of guy so I will hug him in the morning and tell him it's from Ms. Susan in Australia.
04-01-2012, 11:19 PM   #4
imaboveitall
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Shelley, I'm absolutely grinning as I type this, from your post...
YAY Stefan...he's going to do great.
When you see those pounds packing on you'll feel great too.
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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
04-01-2012, 11:27 PM   #5
Twiggy930
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I am so glad that he found the silver lining to it all. I told my son about the super power idea and he loves it! My son is allowed to have gummy bears (not too many), hard clear candy and clear fluids so we send him to school with a small can of Sprite and a few gummy bears. His friends think he has the best lunch in the world!!! Kids aren't really supposed to take soda or candy to school but he has special permission, gives him a little something to look forward to.

Nothing like a Xbox incentive. I've promised a piranah...

Good luck tomorrow and let us know how it goes.

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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.
04-02-2012, 08:40 AM   #6
Tesscorm
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Gosh, I feel bad now... xbox, piranhas... I didn't promise Stephen anything!

Shelley - I so hope it works out well! We tried AGAIN to send you the video last night! Ughh!!! My daughter thought the video file was too large because, as I filmed it on my camera, 'quality' was too high (must have been all those special effects! ). She suggested doing it on my blackberry. Tried last night, and then tried to email it to myself with the clip as an attachment - still too big! WTH??? It's less than two minutes! I really, really don't get it... Stephen had another idea later, he thinks maybe he can forward it to your Facebook. Are you set up on Facebook? If yes, can you PM the details and he'll try to send it to you via a PM.

But, aside from the 'technical difficulties', Stefan's being so brave! Breaks my heart that they have to deal with these grown-up issues. I hope he doesn't find it difficult!

Stephen was also allowed freezies or popsicles (not chocolate) and I arranged for the school to keep some in the freezer in the teacher's lounge. Even at 17, he too was a bit of a hit at lunch getting freezies for all his friends!
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Tess, mom to Stephen, 20
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
04-02-2012, 12:17 PM   #7
izzi'smom
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Hoping that it goes well for you...looking forward to great results!!
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Angie, mom to Isabelle (7) Crohn's Colitis 1/11 Tacrolimus, Bactrim, Prevacid, carafate, prednisilone. Failed: Tacrolimus, Bactrim, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, Cortifoam enemas, dietary changes, fish oil, VSL#3.
04-02-2012, 01:56 PM   #8
Kayla92
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Good luck. It truly sounds like you have a wonderful boy. I hope everything goes okay.!!!
04-02-2012, 04:09 PM   #9
DustyKat
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Oh man, what an absolute champion! How very proud you must be!

Good luck hun, all hope all goes well and with the wonderful attitude S has I'm sure it will.



Dusty. xxx
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Mum of 2 kids with Crohn's.

Sarah [22] Ileal CD
Ileocecectomy 10/07/2006
Imuran 50mg
Vit D, Psyllium Husks

Matt [21] Ileal CD
Ileocecectomy 07/04/2011
Imuran 75mg
Pentasa 2grm
B12, Vit D, Zinc, Magnesium, Turmeric, Psyllium Husks
04-03-2012, 10:23 AM   #10
crohnsinct
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Super powers! LMAO! What a great attitude he has. He is an inspiration to us all. God bless him!
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