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Crohn's Disease Forum » Parents of Kids with IBD » Tater Tot and Remicade


 
01-22-2014, 11:48 PM   #91
Mehita
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He has been on it for years would it just all the sudden start affecting his liver?
I hate to say it, but isn't that the whole reason people on Aza/Imuran/6MP get their bloods checked regularly? Cuz it can happen at any time, right?

Does he have an idea on what he might do next? Father/son infusions?
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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
02-01-2014, 10:24 PM   #92
Jmrogers4
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Just goes to show you sometimes you just don't know what is going on inside their heads. Jack has been going to practices every morning at 6am for baseball in order to try out for the baseball team at his school, because he is a young freshman he is eligible to play on the 8th grade team and the baseball coach has asked him to play over president's day weekend in a tournament that is 8 hours away (he is driving down with coach and staying in a hotel room with 3 other freshman boys that are also eligible - I'm a little freaked out about him going as next infusion is the thursday after he gets back but I'm trying to keep it under control and let him do normal stuff). So anyways, today was the first practice with this new team and they do a lot of conditioning, I came early to pick him up and he was really struggling to do all the exercises and it made me realize how bad these last 6 months have been and he has not gotten a lot of exercise. So talking about him working out and building his strength back up over breakfast his comment was - I don't want to do too much because I want to get to 100lbs, he thought if he exercised he would loose weight. Poor boy! I've convinced him he would be healthier if he did some conditioning and strengthening exercises. I had no idea why he had quit riding his bike all around and asking to go do things - He was worried about loosing weight.
We also went to a coffee shop this morning after, he wanted a hot cider so I ordered a coffee and a cider. The barrista hands me the coffee and the. cider (in a kids cup with plastic kiddie lid and straw). I just looked at him handed Jack the coffee took the cider, took a sip and said Thanks - the look of horror on his face that's what he gets for assuming Jack was a young kid. We laughed about it for 1/2 hour but Jack said it still kind of upset him that someone would think he was so young
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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
02-01-2014, 11:03 PM   #93
DustyKat
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Oh bless him Jm. What a treasure he is and doesn’t it just break your heart to realise what he has thinking.

Way to go mum! That is fab! And squishy hugs to your lad.

Dusty. xxx
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02-02-2014, 05:09 AM   #94
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What a shame he's been worrying about losing weight like that. Amazing what can go on in their heads sometimes. I remember my daughter telling me she didn't want to do sit ups because someone told her it would make her fat. And here I spent all those years doing sit ups to flatten my stomach.
Hope his fitness improves and he enjoys the baseball.
02-02-2014, 09:22 AM   #95
LJS
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We really are living somewhat parallel lives Jacquie, although my son is afraid of getting fat! He really wants to grow taller but is afraid that if he gains weight from remicade and he doesn't grow taller, he will get fat!! Amazing what goes on his head. But I love the story of the coffee and cider - way to go mom! LOL
02-02-2014, 01:01 PM   #96
crohnsinct
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I like the way you handled that!

People just don't think. My younger daughter is ginormous because of precoscious puberty. Towers over every kid in her school, fully developed (at 9!). Everyone we meet feels the need to make some comment about how old she looks. EVEN A DOCTOR! And he was dictating his notes right in front of us and said, "very large 10 year old girl" Really? Just what every girl wants to hear! Oh and at follow up appointment said, "really? you are only 10?" Nah! We just like pulling your leg doc. PEOPLE!

Sending lots of fattening vibes Jack's way. Tell him muscle weighs more than fat!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
02-02-2014, 01:59 PM   #97
Tesscorm
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Poor kid, sad when we realize they have concerns that they don't even share. But, crohns or not, I guess at their ages, we all 'heard' things we thought were true! If it helps him, tell him that S wholeheartedly believes it was the formula he had that really helped build him up, muscle-wise and I know this is what motivates him to continue to drink the shakes (and, I think S is right... all that good nutrition could only have helped!)

Sometimes we forget what it's like to be young and not have the experiences or knowledge that we now have - when you're young, it's so easy to be influenced or worried when you just don't know better.
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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

Last edited by Tesscorm; 02-02-2014 at 04:50 PM.
02-09-2014, 10:16 PM   #98
Brian'sMom
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When Brian was in 4th grade we went to an away football game. As we were paying to get in the lady giving us tickets said to him, "So, are you in kindergarten?" My son just stood there kinda embarrassed. I immediately said in a very nice voice, "Brian, now you get to guess her age!" She was now embarrassed and said, "Please don't! " and laughed. Maybe she'll think twice next time!!
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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.
02-09-2014, 10:19 PM   #99
Jmrogers4
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Happened again at the restaurant last night, hostess asked if we wanted kid's menu, umm no. She asked Jack how old he was he told her 14 1/2 and she says guess not then. Sorry. I think he is getting a little frustrated with it especially now that he is feeling better and gaining weight
02-10-2014, 04:00 AM   #100
DustyKat
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Oh bless his heart.
02-10-2014, 04:43 PM   #101
Gmama
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It's heart breaking to have our kids feel bad about how the look...no matter what the issue is. A friend asked LJ what his New Years resolution was and he said, "Gain 50 pounds" she chuckled. Then he said "So that I don't look so bad."
I could have cried.
It's bad enough that they ever have to feel physically bad, but the mental part wears on them too.

JM-I'm so thrilled that Jack is having such great results from the Remi! He is going to shoot up all at once!! I can just feel it!!!!
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mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Pentasa
Folic acid
Iron
Methotrexate
Back on Humira 8/22/14
Failed
Remicade 11/22/13-7/24/14
Flagyl/Cipro
Imuran
Humira 7/13-11/13)
Entocort
02-10-2014, 05:00 PM   #102
Jmrogers4
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I really think so too, it is just hard for him and me waiting... He'll be 15 in July and I figure by then he will be "15 year old sized" and filled out. We'll get an official weight and height check at his infusion next week but I think he has grown a little, he came out in a pair of jeans on Saturday, we were going to a concert, and I had to send him back to change because they were too short. It sure would be nice to get rid of that favorite raggedy t-shirt he has had since 4th grade because it's too small
02-10-2014, 05:05 PM   #103
Gmama
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Jeans too short!!!! That's awesome!!!! I can't wait until LJ needs bigger clothes! Ha! He won't be excited to go shopping but I will be thrilled!!!
Never thought I would feel this way about boy clothes! Ha!
02-10-2014, 05:20 PM   #104
Jmrogers4
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Don't I know it... Jack actually likes to buy clothes, he has quite the GQ style and sometimes comes out for school and I'm like really are we doing a photo shoot but then my younger one will wear nothing but athletic shorts and t-shirts and has to be talked out of flip flops most days (even when it is snowing outside). He wears bow ties to school about once a week He came walking out of his room last week in dark grey jeans, white button down oxford with a blue plaid bow tie and grey sweater and topsiders. (Apparently the girls all compliment him when he wears such attire - go figure). So definitely the mind of a 14 1/2 year old boy, if the girls like it, I'm doing it.
02-10-2014, 06:20 PM   #105
my little penguin
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for jeans that are "Too short"
I know it took DS a while to "grow" on remicade - many months

Finger nails - are a BIG clue here.
They need CUT ALL.THE.TIME - every week to two weeks. then pants get short.
The pants I bought DS at the beginning of the school year - too short already.
So there is hope.
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02-10-2014, 06:29 PM   #106
Jmrogers4
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If only he would quit chewing on them so I could tell. Oh well get him in remission then I'll work on nagging about chewing on his finger nails. It drives me nuts!
02-11-2014, 09:31 AM   #107
crohnsinct
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OMGosh! How cute he must be going off to school dressed like that!

Yeah, growth was the last thing to come for O and it snuck up on us. But when it did boy...6" over 2 years and although she has gained almost 30 pounds she is still rail thin. I think that was going to be her lot CD or no CD...I was rail thin also. She is making me sad though because she constantly very nonchalantly says she is ugly. Very matter of fact...Like some people have blue eyes, some brown..some are attractive some ugly. If only we could get that darn psoriasis under control. But we have remission so guess you can't have everything.
02-11-2014, 09:53 AM   #108
Tesscorm
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It is so sad when they have to struggle with their mental/emotional self images! Hard enough when you're a teen... so much worse when you have something working against you! FWIW, even pre-crohns, S was a small, skinny kid - although my kids are only 13 months apart, my daughter (older) was always a foot taller than S and weighed 20+ lbs more... BUT, in grade 9 (14-15 years old), S just suddenly REALLY shot up (grew close to a foot!)! It was actually this growth spurt that we thought was contributing to his sore back months before his diagnosis. So, hopefully, Jack's spurt is right around the corner!

And, love his style!!! My nephew, has always been like this too. From grades 3 or 4, he started dressing up for certain days in school - he'd come down dressed in a suit & tie on picture day or on a day he had to do show and tell! And, yes... even at that age, he knew the girls liked it!
02-11-2014, 10:40 AM   #109
Jmrogers4
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I'm so hoping for that Tess, but even if he stays short I think he would just like a little more maturity to his face kwim - I'd like a little less maturity on mine but...
Poor O - She is beautiful. They have such fragile egos (pretty much all teenagers) so anything that sets them apart, gets picked apart.
I've been telling him about S and working out and he has started working out, it's nice seeing him get some strength back I can't believe how weak he has gotten in 6 mos. He used to be able to do a ton of sit ups, He could barely manage 5 last week. He got 10 done last night.
I think even though we knew it wasn't going to happen over night we were still wishing for it. This damn disease can take you down over night but it takes forever to build back up from there.
02-11-2014, 11:07 AM   #110
crohnsinct
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Eye of the tiger jack!!!!!!!!!
Smiley_Workout.jpg
02-11-2014, 12:26 PM   #111
Tesscorm
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I know I've said it before but S really does believe that the EN formula pumped him up. He used to work out before crohns (so about 15-16 years old) and never built up much muscle (possibly partly due to his upward growth spurt and then the early stages of crohns). Then lost 25 lbs at diagnosis, so had to regain that weight but, once he regained those 25 lbs, he kept gaining... and as he gained strength, he started exercising more with weights (really just going back to what he'd been doing before getting sick, so no new special program) and then started to see real results! Much more than he'd seen pre-crohns. So, while part of it may have been due to the growth spurt/crohns dx, S was/is convinced it was the EN formula that really helped him build up bulk. His height hasn't changed much since dx (ie 1 inch??) but, to give you an idea on weight change - 140-145 pre-sickness, 125 at diagnosis, 135 after 6 weeks EEN, 155 after another 6 weeks of supplemental EN and then over the next few months to 160-170 lbs (and stable since...). But, just so that Jack doesn't expect these same exact results immediately, S was diagnosed just before turning 17 so this filling out/bulking up gain happened at 17-18 years old - probably the age range that any teen boy will begin to develop a more 'manly' body anyway (the EN formula probably just helped this process along).

Throughout this period, S was taking in 1500 cal/day, 5 days per week (with no exception! - if he had to miss EN because of vacation, I elminated the 'off' days in the weeks before and after the vacation to make up for it) in elemental formula for 2 years!

I'll try to find pictures of S in Grade 8, grade 10 and recent that show the difference and post later.
02-20-2014, 06:33 PM   #112
Jmrogers4
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3rd loading dose done and all went well. Appointment made for 8 weeks unless symptoms appear then they will just fit him in. Official weight 101.6, no gain in height yet... Took labs this time so I will be interested in Alt Phosp. levels and see if those have increased. Otherwise he feels good and every one there was commenting on how his face has filled out and how good his color looks.
Sad thing while jack was getting his infusion, GI had appt's with 2 brand new Crohn's diagnosis
02-20-2014, 06:39 PM   #113
LJS
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Son is going for second loading dose on Monday (we had to move it from tomorrow to monday to accomodate some special school assembly he wanted to be at.. and I'm thrilled b/c I'm sick as a dog so tomorrow would be tough!)...no change yet really in appetite - maybe a slight increase but I'm patiently waiting!

Glad Jack is doing so well!! yeah!
02-20-2014, 10:37 PM   #114
Jmrogers4
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Well Crap!! Jack has a rash on the back of his neck and it looks like it is growing to his chest. Do you think it is too much to hope that it is from something else and not the remicade? I just gave him some Benedryl and sent a message to his GI. Labs just posted and they look good. ESR is 9. His alk phosp is 259 the highest it has ever been it's usually 196 so now I'm really hoping for growth. I tried taking a picture of the rash but can't get it to come out very well
02-20-2014, 10:42 PM   #115
kimmidwife
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Take a few pictures of the rash and send then to the doctor. Hoping it is just a coincidence.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-21-2014, 12:44 AM   #116
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Hoping it is just a coincidence! Hope the labs are pointing to grow, grow, grow!
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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
02-21-2014, 07:38 AM   #117
crohnsinct
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WOOHOO! Welcome to the 100 club Jack!!!!!! :yoshiju mpjoy:

Rash?! Tell him the committee never approved a rash. As a matter of fact I think the committee is pretty clear on our position of no rashes allowed!!!!! I really, really hope it is nothing!!!!
02-21-2014, 10:43 AM   #118
Mehita
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Can you attribute the rash to anything else? New laundry soap? New food? You don't pre-medicate, right?
02-21-2014, 12:27 PM   #119
my little penguin
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DS got lots of rashes on his torso from remicade.
Hope its from something else
02-21-2014, 12:28 PM   #120
Jmrogers4
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No pre-medication, went for Mexican food after infusion- he ordered the same thing he always does but this time he actually ate the whole thing, no new laundry soap but I'm hoping it was just from something else. He is fine this morning and rash seems to be gone but I told him if anything felt funny or itchy he was to go straight to the nurse's office and call me.
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