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03-04-2013, 10:01 PM   #31
Tesscorm
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I'm a strong believer in the physical and mental benefits of exercise but there's also the potential for emotional benefit - when Stephen was diagnosed, he didn't keep it a secret at all from his entire hockey team. These were 16 year old boys and they all supported him, visited him at the hospital or at home (some came specifically to watch the NG tube insertion! ) and backed/encouraged him when he wasn't playing at his best. Whether a team sport or not, sports create camaraderie and shared goals and, I believe, this can translate to a support system for kids.
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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
03-04-2013, 10:17 PM   #32
Brian'sMom
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Thanks 'My Little Penguin" for the link.
My son loves sports. He was so good at soccer...still is, but the boys are so much bigger than him now. I worry he's going to get seriously hurt but I hate to take that away from him (being able to play and be on a team like everyone else).
I did get him to start drinking a Boost a day. Hopefully he'll add a second soon. I'm determined to get this kid to gain weight!! He's 13 and weighs 65lbs and is 4'7"
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
03-04-2013, 10:25 PM   #33
Tesscorm
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I hope the Boost helps!! I always worried when Stephen was one of the smaller kids on his hockey team!

I know Stephen's a bit older but, in the last year, he's become much more diligent in trying to 'bulk' up and eating foods that will help him achieve that (being a picky eater makes this challenging! ). While he never debated using EN as a treatment, he believes it is what has helped him build muscle in the last year (I imagine he's at least partly right??) - he's even requested to continue with the overnight EN eventhough he's started remicade.

Perhaps if Brian can connect that the benefits of Boost will lead to improved soccer 'performance', it might motivate him to add the additional shake??
03-04-2013, 10:29 PM   #34
my little penguin
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Hugs
DS still does partial EN while on remicade.
This has allowed him to grow over three inches this year and gain 20 lbs.
Hope your son can see the benefits soon from the boost.
I will say that although boost worked for DS prior to dx to keep him from losing weight after a while it was not enough and we had to switch him to a peptide based formula.
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DS - -Crohn's -Stelara
03-04-2013, 11:01 PM   #35
Jmrogers4
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The one or two boosts that Jack did prior to supplemental EN - peptide formula this past month never seemed to make much of a difference. At 13 he was 5' and 77lbs. Since drinking the Peptide this last month he has gained 12-13 lbs so far and I'm expecting the height to start happening as well.
Based on that height and weight he would be in the very low percentile for BMI. The peptide are easier for him to absorb and he is also drinking 8 of them a day for a big calorie boost per the prescription from GI
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-04-2013, 11:06 PM   #36
my little penguin
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Jacque
Height takes a while after weight gain.
At least for ds it took about 3-4 months of sustained weight gain before he grew vertically.
Feet grew first also finger nails grew a ton
03-04-2013, 11:10 PM   #37
Jmrogers4
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Thanks MLP, we just had to buy him new shoes as he has out grown this pair instead of them falling apart before he could out grow them.
He chews his fingernails - Drives me nuts! so I don't know if I could use that.
But I'm hoping this spring is a big growth time. Not that we would say anything to him but he has the cutest little belly right now. He put on a pair of jeans this morning that he has worn for the last couple of years and couldn't get them buttoned. When he left my room I did a little happy dance.
Baseball practice starts this week so I hope the increased activity doesn't interfere too much.
03-05-2013, 12:01 AM   #38
Mehita
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We have a family "rule" that everyone (mom and dad too!) must be involved in some sort of sport or activity regularly. It's so important to keep these kids active! I think it also gives them some motivation to get better as quickly as they can when they're not feeling the best because they want to get back to their team or activity. Lukas' only concern about his resection was whether he'd be healed up enough to go out for the tennis team this spring. Take that, Crohn's!!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
03-05-2013, 09:31 AM   #39
Brian'sMom
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What brands were peptide based that your kids used? The very vanilla boost (high protein) is pretty good tasting.
03-05-2013, 10:58 AM   #40
Jmrogers4
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We use Pediasure Peptide, Pepatem and Pepatem Jr are other ones. I believe there are others. MLP do you know? You can't buy them in the store. They come in 1.0 and 1.5 basically 1 calorie per ml so 1.0 would be 237 and 1.5 is 356. It was explained to me that anything over 3000 daily calories = weight gain. Of course the old standard put in more than you burn and you will gain weight.
Jack thinks the Peptide tastes most like Boost, he didn't like the Pepatem or Pepatem Jr. but I know MLP's son drinks them. We got a whole bunch of samples from the GI and I told Jack find one you can drink because per the prescription this is what is happening.

We are a pretty active family I think the only month we don't really have activities in is November, football is over and skiing has not begun. The boys go skiing every weekend in Jan/Feb. Jack was on the ski/snowboard race team at school for the first time this year and James has been on the extreme ski team the last couple of years. Just finished that up and baseball practice starts Saturday for Jack and lacrosse for James started last week. When that is over in June, in starts the camping/hiking/fishing until football starts in August. Although Jack is not playing this next year as there has been a light weight team and that is not an option next year since it is high school level, there is one team for freshman and I'm afraid he would just get crushed since he is so small. Unless of course all the supplemental EN works really well and he gains 30-40 pounds and grows 5-6 inches
03-05-2013, 11:36 AM   #41
Tesscorm
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While this was pre-crohns, Stephen was a light weight until about grade 9 to 10 when he suddenly shot up, I think he grew about a foot! His high school only had a varsity hockey team (grades 9 to 12) - probably lost 10 years off my life worrying about him playing against grade 12s when he was a small grade 9er (and, unbelievably, the school board allowed full contact/hitting!!) We were always threatening to pull him off the teams if he didn't eat more and put on some weight (he always seemed to have something more important to do than eat! ) Even pre-crohns, I wish it had crossed my mind to give him some of these shakes then...
03-13-2013, 05:41 AM   #42
DustyKat
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Crohn's Mom...

Can you please copy this thread to IBD and Children - Helpful Links.

Thanks!
Dusty.
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Mum of 2 kids with Crohn's.
02-24-2017, 10:08 PM   #43
NGJ
 
Join Date: Feb 2017
Location: Egypt
Hi everyone did any of your kids try the modulen and how was it successful my 9 year old just started his 6 weeks and I would like to knw more about it . Does it really help ?
02-25-2017, 11:46 AM   #44
pdx
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EEN was very helpful for my daughter. It helped lower her inflammation, and also helped her gain much-needed weight. I hope it helps your son. Has he also started a maintanence medicine? EEN often works well, but it isn't a long-term solution.
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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
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