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


 
01-10-2014, 10:15 AM   #61
Sascot
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Glad it went well! Hope the headache goes away quickly. Loved Frozen!!
01-10-2014, 10:44 AM   #62
araceli
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Glad it went well.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
01-10-2014, 01:34 PM   #63
crohnsinct
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Yeah, O's doc stopped premedicating with Benedryl a while ago. Thank God because it zonked her out totally. Ever since that stopped she has been fine.

She had infusion today and 3 boys in the room all agreed they get tired....hmmm...could it be a boy thing? Ya know like all that driving and sitting around doing nothing would make any energetic teenage boy zapped. I know I am totally exhausted after infusions...I hate the long boring drive and all that sitting!

Now you and those three boys have me nervous as O has a huge track meet today after school...She can NOT be tired!
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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
01-10-2014, 02:57 PM   #64
Maya142
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My daughter is always tired the day of the infusion and the day after. At our infusion center, the nurses always tell us that being tired and achey the day after is very common. One of her friends also has Crohn's and is on Remicade and feels the same way after her infusions. It probably just depends on the kid.
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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
01-14-2014, 01:43 PM   #65
Jmrogers4
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I'm almost afraid to post but... Jack weighed 91 pounds on Thursday at infusion as of last night 96 pounds!! and he is eating! and he is even telling me he is hungry! He ate more of the weekend but was running around, had ski races all day on Saturday and my hubby kept saying he looks pudgier. Yesterday morning he comes out from getting ready and says I'm hungry can I have breakfast instead of a shake , ate a huge bowl of rice krispies and a bagel. Last night at dinner he had seconds and since there wasn't anymore left after that, he ate a corndog.
He has more energy - I guess I didn't realize how tired he was, last weekend after going up just for his ski race (so maybe 2 hours) he came home and slept on the couch for 5 hours. This weekend he went up early boarded with his friends before the race, raced, came home (about 6 hours) and stayed awake and still had tons of energy.
You can all say I told you so.... I wish we would have done this sooner..
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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
01-14-2014, 02:25 PM   #66
Farmwife
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Ya, so happy to hear.
I'm so happy for you both and even kind of jealous.
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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
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-14-2014, 02:28 PM   #67
Clash
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Love the update, so good to hear! I'm so glad things are going so well!
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Clash
Mom to
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
01-14-2014, 02:38 PM   #68
Tesscorm
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What a GREAT update!!!
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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
01-14-2014, 03:05 PM   #69
DustyKat
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Oh wow, that is brilliant Jm! I am so, so happy for you you all! Long may it continue.

Onwards and Upwards.

Dusty. xxx
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Mum of 2 kids with Crohn's.
01-14-2014, 03:46 PM   #70
crohnsinct
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BANG WENT THE BIG GUNS! YAY Jack and Mom...kicking Crohns ass!
01-14-2014, 03:48 PM   #71
LJS
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I have to say, this post couldn't have come at a better time for me, as we do bloodwork next week and meet our ped GI to start the ball rolling on remi for my son.... just so relieved to see how well Jack is doing! You must be over the moon!!
01-14-2014, 03:48 PM   #72
Jmrogers4
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THE BIG GINS!
Oh how you read my mind and didn't even know it.. Celebration with a little gin and tonic. This needs bigger guns then wine.

LJS - It took me a looong time to pull the trigger, there was always that well he's not that bad but obviously now the lack of growth/appetite was a big flag for us. Can't believe the difference even after 1 dose.

I can't wait for next week when they weigh him before his infusion and will be excited to see his labs
01-14-2014, 03:50 PM   #73
crohnsinct
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LMAO! That was a typo...or was it a Freudian slip?
01-14-2014, 06:48 PM   #74
kiny
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Lots of people have avoided surgery through remicade. Before remicade they only had imuran, people who failed on imuran were treated with surgery. I got crohn's disease around when remicade came out. It is an extremely effective medication if other treatment has failed, it still has the highest remission rates of any crohn's disease treatment to date.
01-14-2014, 09:42 PM   #75
my little penguin
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Woohoo!!! Glad you are noticing a difference .
We loved remicade for DS
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DS - -Crohn's -Stelara
01-14-2014, 11:13 PM   #76
Mehita
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Isn't it wonderful? Sooooo happy for you guys
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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
01-14-2014, 11:22 PM   #77
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Doing a happy dance for good news!!!!!
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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.
01-16-2014, 11:47 AM   #78
Jmrogers4
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Just had a call back from endocrinologist, bone age is 13 so about 1-1 1/2 years behind. He was low enough in Hgh that we could do further testing on it but we talked about the Remi and how he is eating now so maybe we don't need to do anything. We have a follow up in April and can re-evaluate if we need to do further testing or we can do it now. What do you guys think? It would be an all day test so he would miss another day of school and for him it's more tests... I'm I okay in waiting and seeing where we are at then?
01-16-2014, 11:52 AM   #79
crohnsinct
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A year and a half behind...I would wait. Betting Remi fixes things.
01-16-2014, 12:04 PM   #80
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I think I would wait too. Even though C's weight still fluctuates, his height has really done well overall since starting Remicade. I will say it has been slow and steady and I do think that his disease state has played a role, tweaking doses, schedules and adding meds.
01-16-2014, 12:22 PM   #81
my little penguin
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Remicade is strong so I would wait to "see" what it can do since its only till April
You will have a better idea by then.
One thing that indicated DS was going to grow was nail growth.
Once on remicade I had to cut his ginger nails all the time .
01-16-2014, 02:01 PM   #82
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Glad things are going well! I would also think it's fine to wait and see
01-16-2014, 02:35 PM   #83
Mehita
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After seeing how much DS has grown just in the past couple of weeks on Remi, I vote for waiting too.
01-16-2014, 10:02 PM   #84
momoftwinboys
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Great news! Glad to hear jack has more energy and appetite. Long may it continue!
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Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
01-17-2014, 08:37 AM   #85
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Grace is 1 1/2 yrs behind also. The Endo told us that easy for the body to make up. Of course she's 4.
01-22-2014, 12:34 PM   #86
Jmrogers4
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GI nurse called to tell me that Jack's labs all look fine from labs taken at last infusion and then she said that the GI told her to say "of course" after labs look fine because Jack's labs always look fine. I don't know exact numbers, they'll print me a copy since I can't see any of his stuff on "mychart" anymore since he is over 14. I was complaining to the nurse about that and she said she would fix it tomorrow while we were in the office in other words give Jack (me) his own sign-in/pin #.
Imuran may not be doing the trick for hubby anymore He just had labs and his liver numbers were all out of whack. Go for prometheus liver something or other test. He has been on it for years would it just all the sudden start affecting his liver?
01-22-2014, 12:39 PM   #87
LJS
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That's awesome news about Jack. My son had his PPD (TB) test yesterday, we go for bloodwork on Friday and then meet with doc right afterwards to start the remicade discussion.

Has anyone had their child complain of burning sensation after the PPD test? Not in their arm, but in their legs! My son said his inner thighs have been burning since, but I see nothing there.. I left a message for the nurse to call me and I doubt it's anything to worry about but was wondering if anyone has come across this.

thanks,
Lin
01-22-2014, 09:05 PM   #88
Farmwife
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I'm glad about the test for Jack but bummed for your hubby.
See what these men do to us. One gets well and the other gets worse.
And they wonder why we get tired and irritable.
01-22-2014, 09:28 PM   #89
Jmrogers4
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What??? I'm the perfect picture of joy all the time (I'm really trying to keep a straight face)
01-22-2014, 09:32 PM   #90
Tesscorm
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Oh yeah, me too! .....

(... where is that wine? )
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