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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade infusion survival kit?


10-02-2014, 01:08 PM   #1
hockeymom
 
Join Date: Sep 2014
Location: Minnesota

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Remicade infusion survival kit?

Hello,
My 13-year-old son begins his first Remicade infusion tomorrow at our GI's infusion clinic. I am wondering if anyone has advice of things to include in a "survival kit" of sorts to get through the appointment and back home? We have a 3 hour trip so I would prefer not to have any surprises that I'm not at least somewhat prepared for.
Thanks!
hockeymom
10-02-2014, 02:25 PM   #2
Tesscorm
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Join Date: Jun 2011
Location: Ontario

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You might find this link helpful, it contains lots of info from parents whose children are on remicade.

http://www.crohnsforum.com/showthread.php?t=44907

As far as a survival kit, my son takes only his ipad otherwise he just sleeps. I have been told that being well hydrated helps, so I urge my son to drink lots of water on infusion day. Have read other kids take snacks as well.

I'm sure others will be along with more suggestions.
__________________
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
10-02-2014, 02:33 PM   #3
syzygy
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Join Date: Sep 2014
Location: Northampton, Massachusetts

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I'm starting a couple of weeks and have been making a mental cheat-sheet based on a few threads here and tips from friends who have done chemo. [I've also started adding ideas from this thread.]

- antihistamine (loratadine for me)
- Tylenol
- iPad & charger
- book
- snacks
- baked goods to share with staff (reportedly makes them extra-nice)
- Gatorade or similar (hydration)
- phone
- sweater (in case it gets chilly)
- med notebook
__________________
Intermittent SBOs starting in 2005
Diagnosed 2013
Started Remicade October 2014

Last edited by syzygy; 10-03-2014 at 09:45 AM.
10-02-2014, 03:36 PM   #4
Clash
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My son took any school work he needed to complete, kindle or laptop. The IV lab my son uses is in his GI group's office. They have one room that is quiet for study, reading etc another that has Wii, Xbox 360 and DVD with huge flat screen so the kids can bring a movie or game and they vote and take turns on which they do. The group of kids C infused with eventually started timing their appts so they'd always be together and could decide at one infusion what the plan was for the next. The nurses provide snacks and drinks.
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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
10-02-2014, 05:59 PM   #5
ChicagoMom
 
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Join Date: May 2014
Location: Chicago, Illinois
My 11-year-old just had her first infusion today at a local hospital. We took books (for both of us), DVD's, iPad, etc. The hospital was very well equipped and gave us lots of stuff too. The only thing I wished I'd had with me were a few snacks. I did get lunch from the cafeteria, and my daughter ordered to our room, but a few small snacks would've been nice while we were waiting to get started. Actually, I also wished I had a sweater because I did get a little cold. Everything went really smoothly and it was a huge relief to have the first one over with. Good luck!
__________________
*R*~mom of *L*~age 14-diagnosed with CD 5/14

Currently taking:
Remicade 10mg/kg
Methotrexate 15mg/week
NG-tube at night

Past meds:
6-mp--discontinued 9/14 because it caused bone marrow suppression
Prednisone--5/14-11/14
10-02-2014, 07:41 PM   #6
Mj1gaynor
 
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Join Date: Jun 2013
Location: Wallingford, Connecticut
My son had his first infusion in August. He was diagnosed last year and is 10. The anticipation of the infusion was worse than the experience. He told me last week that he likes going for his infusions. We typically bring homework so that when he leaves he has a free night to go to soccer or football practice and get all his energy out!

We do buy a snack for him - anything he wants- and let him play games on his IPAD. The time goes by fast and we enjoy our time together.
10-03-2014, 07:16 AM   #7
gemling
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Join Date: May 2014
Location: United Kingdom

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I just had my first infusion, I took my phone and charger so I could surf the internet/read books/play games on my phone during the infusion and wait time afterwards. They offered us tea/coffee and biscuits regularly and I was also offered a sandwich towards the end of my wait time as it was midday. But I am on EN and just starting a reintroduction diet so I just drank some water and had 2 Fortisip drinks whilst I was there. In a few weeks I can try tea so I will do that and might bring my own soy milk as I won't be able to have dairy yet.

So really some kind of tablet and snacks would be my advice.
__________________
Diagnosed May 2014
Jul 2014 Blockage caused by flare up
Sept 2014 Finished 3 Weeks of EEN. Started LOFFLEX diet
Mid-Sept 2014 Another blockage
Oct 2014 Started Infliximab


Current Medications:
Infliximab Infusions (Remicade), Loading doses
Azathioprine (100mg)
Pentasa (4g)
Supplements:
Adcal-D3 (1g)
Ferrous Fumarate (420mg)
Multivitamin
10-03-2014, 08:45 AM   #8
dave13
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Join Date: Dec 2013
Location: Maine

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I'm a big kid and my infusion day kit is similar to what everyone has mentioned.I can get up and walk around if I'd like,rather then sitting the whole time.I like to read or chat/text with a crohnie. I really like the game room/study room idea Clash wrote about. Kids must like that. Heck,I would!
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"It does not do to dwell on dreams and forget to live."
10-03-2014, 09:42 AM   #9
syzygy
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Join Date: Sep 2014
Location: Northampton, Massachusetts

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I'm a big kid and my infusion day kit is similar to what everyone has mentioned.I can get up and walk around if I'd like,rather then sitting the whole time.I like to read or chat/text with a crohnie. I really like the game room/study room idea Clash wrote about. Kids must like that. Heck,I would!
Yeah, how about some fun for the big kids too?!
10-03-2014, 09:43 AM   #10
syzygy
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Join Date: Sep 2014
Location: Northampton, Massachusetts

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I will update my list above to include a few extra things people mentioned. Keep the ideas coming.
11-16-2014, 04:44 PM   #11
astarks
 
Join Date: Nov 2014
Location: Missouri

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They always give me benadryl/tylenol/solumedrol as premeds, so I usually sleep through at least part of the infusion. My mom is a quilter, and hospitals are always cold, so when I first started Remi infusions as a kid, she would always bring along one of my favorite quilts to make me feel more comfortable.

I know it sounds strange, but try and make it into something to look forward to. I used to dread my infusion days, and while there are always side effects to deal with for the few days after, I actually kind of like them now. I consciously don't bring a laptop/ipad, and I leave my cell phone off. I generally just bring a book to read or a sketchpad or something, and it's my downtime when I don't have to worry about school or checking e-mail or anything else. That's more of a psychological "survival kit," but it's changed things a lot for me.
__________________
Dx: Crohn's Disease, SpA, May 2004 (age 11); POTS, 2012 (Age 19)
Currently taking: Remicade (Crohn's); MTX (SpA); Florinef, Midodrine, Klonopin (POTS); Iron (Anemia)
Past Meds: Prednisone, 5-ASA, 6-MP, Imuran, Flagyl, Bentyl, Celebrex...you name it!
Other issues: POTS, SpA, Anemia
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