Crohn's Disease Forum » Parents of Kids with IBD » Remicade infusions- where?


06-03-2014, 12:24 PM   #1
Momtotwo
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Remicade infusions- where?

Where does your child receive Remicade infusions? A hospital? Outpatient center/office? Is is dedicated to treating kids?
06-03-2014, 12:48 PM   #2
Jmrogers4
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My son receives his in his GI's office. Although they are building a new Children's center that will have an infusion center and house all the pediatric specialties under one building at that point they will move infusions there but it is not supposed to be done for 3-4 years and Jack will be 18 then.
They may have to do something before then though as last time we were there they said they now have 30 kids on remicade so it is getting difficult to get them scheduled especially if you have an emergency and need to get in earlier. The one really nice thing is we get a face to face check in with the GI while we are there and most of the time we even get lab results back before we leave.
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Jacqui

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

Husband dx Crohn's 3/1993
currently none due to liver issues
06-03-2014, 02:15 PM   #3
Mehita
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Location: Minnesota

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My son goes to the children's hospital. Well, technically, it's the building next door, but it is an entire floor dedicated to pediatric infusions.

We did go to another clinic once out of convenience. It was an adult infusion center, but it was just too... sad. They also weren't very well versed in Remicade. My son was given extra special treatment because they don't get many kids there, but it wasnr enough to keep going back for. We like the pediatric clinic much better.

I have heard of some people getting their infusions at home with a home health nurse.
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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
06-03-2014, 03:36 PM   #4
Clash
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My son"s GI group has an IV lab in their office. It was all IBD kids which was great because they would inevitably discuss CD issues so it was sort of an outlet for him. It was kid friendly too, with DVD, Wii, Xbox, snacks and what not. Every other infusion we would also see the GI and if the remi nurse felt something needed to be seen about at the in between infusion she would make it happen while C was being infused.
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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
06-03-2014, 04:27 PM   #5
my little penguin
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DS got his at a pediatric infusion center located within the children's hospital where his GI is.
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DS - -Crohn's -Stelara -mtx
06-03-2014, 06:26 PM   #6
Maya142
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At the Children's Hospital where her GI is! M honestly enjoys her infusions - it's a good chance for her to take a nap, catch on on homework or watch TV.

We've also been to local hospital (which mostly caters to adults) but their infusion center was mostly a cancer center. Like Mehita said, kind of depressing.
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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
06-05-2014, 12:47 PM   #7
araceli
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Join Date: Nov 2012
Location: El paso, Texas

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Pediatric oncology center. Very nice place, kind nurses, but you see a lot of sick kids.
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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.
06-05-2014, 09:27 PM   #8
Tesscorm
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Location: Ontario

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We have infusion centres with nurses and doctor(s) attending. Centres are used for both children and adults - S, 19, and my friend's daughter, 12, go to the same centre. My son also finds the centre relaxing - reclining chairs, movies, etc. He usually takes his laptop or just sleeps while there.
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Tess, mom to S
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
06-05-2014, 09:54 PM   #9
myboy12
 
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Join Date: Jan 2014
Location: Chicago, Illinois

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Our son's Remicade infusion is done at a Children's hospital, unfortunately, he has to be admitted to the peds floor, but he gets all the amenities, xbox, TV, food and last time a visit from the Chicago Bear's mascot , coach and owner! Nice surprise provided by the hospital!
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Son diagnosed at age 12, December 2014

Current meds: Remicade every 8 weeks (May 2014)
Past meds: Prednisone, 6MP and 3000 mg Pentasa
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