Crohn's Disease Forum » Parents of Kids with IBD » Changes with Remicade

09-16-2014, 09:54 PM   #1
Join Date: Sep 2014
Changes with Remicade

My son, 9 was DX June 2013 with Crohn's. He has been on Remicade for a year now and can make it 6-8 weeks between infusions. He is deemed as being in remission. We had to move his infusion to tomorrow (supposed to be next Thursday) due to diarrhea. Tonight, he had bright red blood in his stool (first time since before he was dx). Have any of your children experience this, how common is it? We have an appt next Thursday for his 6 month check up with his GI. He has also gained about 20 lbs in the last 6 months or so with no change in eating or level of activity (he is an active kiddo in lots of sports) so I asked for a blood test tomorrow when they pull labs to check his thyroid. Have any of you experienced this with your children?
Just wanting a little reassurance at this point.

Thank you
09-16-2014, 10:02 PM   #2
Emily's mom
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Location: Pawleys Island, SC

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My eight year old is up for her fifth infusion in the next couple of weeks. This is all new to my family. For now all is good, but I fear the day the disease shows it's ugly head.

Keep us posted on your son. Hope all is well soon!

09-16-2014, 11:14 PM   #3
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Location: Kansas

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The weight gain sounds good. Gaining without extra food and same activity. Sounds like he's absorbing nutrients. When crohn's is flaring, you lose weight pretty fast. Hopefully the blood spot is a one time thing. Good thing you happen to be right at your 6 month appointment time!
09-16-2014, 11:39 PM   #4
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Location: Minnesota

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Could it be a fissure? Will he let you look at his bottom?
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-17-2014, 12:30 AM   #5
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Has the dose been changed (increased) since he's gained weight? I know some infusion centers do the dose based on the weight the day of the infusion but others don't.

If it has been adjusted for weight gain, perhaps he just needs a higher dose or Remicade more frequently? One of the infusion nurses told us kids often need it more than every 8 weeks. My daughter gets Remicade every 4 weeks.
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
09-17-2014, 04:10 AM   #6
my little penguin
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Yeah that ^^^ DS needed a higher dose -7.5 mg/kg every 6 weeks to maintain.
Remicade is easily pulled in and out and increased and decreased.
It gives you a lot of flexibility .
As far as bloody d each kid is different.
DS has had a couple blips like that that stop on their own after a day or two but we always get blood and stool tests just to be sure .
DS - -Crohn's -Stelara -mtx
09-17-2014, 06:36 AM   #7
Join Date: Sep 2014
Thank you for the reassurance. Hoping the blood is a one time thing and yes, they do adjust his dose based on his weight at the time of his infusion...he is in great hands...Texas Children's downtown Houston..Have your children also experienced flares at the beginning of school? Last year at this time, he wasn't in remission and had just gotten out of the hospital...due to a reaction to Imuran...any insight would be helpful.

Have any of you heard that a side effect of Remicade can be weight gain? Or a change in thyroid (which is being checked with blood drawn today)?

Thank you.
09-17-2014, 08:33 AM   #8
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Location: Ontario

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I just saw a thread on weight gain while on remicade?? It think it was in the Treatment/Remicade subforum.

I don't recall hearing of a connection with the thyroid. What symptoms led to this testing? Asking because one thing my son has complained about is sensitivity to ambient temperature. (His T4 and TSH have been tested periodically and have always been in normal range.)

Hope the blood is a one time thing!!
Tess, mom to S, 22
Diagnosed May 2011

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
09-17-2014, 09:12 AM   #9
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.Have your children also experienced flares at the beginning of school?
Every year we have symptoms, I think it's just the stress and change, this year it has been much milder then the past but he started remicade in January and has been in remission. So basically fatigue, decreased appetite. He's been in school for 3 weeks now and seems to be bouncing back

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
09-17-2014, 10:32 AM   #10
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Location: Toronto, Ontario

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You mentioned bright red blood and it made me think of c diff. Could he have it? Has he been tested?
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone ☆
09-17-2014, 11:58 AM   #11
Join Date: Sep 2014
Well, hoping and praying Remicade today will do the trick. He loves his treatments, looks forward to them and says he "feels like Superman" when he is finished...good thing is we are going to his GI next week and I can ask all of these questions as well.
09-18-2014, 02:16 PM   #12
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Join Date: Jul 2011
Location: San Diego, California
It'd be worth checking for antibodies, if that's not normally done in his bloodwork. Has anything else changed recently - diet/stress, other symptoms of a flare?
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections

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