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Crohn's Disease Forum » Parents of Kids with IBD » Infusions start tomorrow


05-17-2017, 04:35 PM   #1
ValerieB
 
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Infusions start tomorrow

Hello!

My 16-year-old son starts Remicade infusions tomorrow and I have a couple/few questions.

1. Will he be immuno compromised after starting these? If yes does he become more so after every infusion?

2. Will we see any positive change after the first infusion?

3. Any common side effects?

4. Ideas on what to bring with us for the 2-3 hour span?

5. How will he feel when the infusion is over? Tired? etc.

Thanks!!!
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Aden was diagnosed April 3rd, 2017 after scoping was done. He is currently on:

16-year-old son
Remicaid infusions.
05-17-2017, 04:53 PM   #2
my little penguin
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Immunocompromised
Means more likely to have an opportunistic infection
Not the common cold
So if your child gets the flu he would be more likely to develop pneumonia with it
So flu shot every year

Ds has been on them since age 8
He is now 13 far less colds etc than any other kids
Since their immune system is over active

Some see kids feeling hungry or better after first infusion
Ds it took three plus infusions or 7-8 weeks to feel better


Bring snacks
Ipad movies phone

Most get Tylenol and Benadryl with the infusion
Ds slept the whole day afterwards

No real side effects

Ds system fought remicade
So he had blisters and skin rashes
He eventually had allergic reactions and the infusions had to be stopped
He was then switched to humira
That was over 5 years ago


Good luck
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05-17-2017, 06:00 PM   #3
Maya142
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My daughters have been on biologics for 7-8 years and neither has seen an increase in infections. They usually get a couple colds a year, but that's it (and all kids get those!).

We didn't see any positive improvement with the first infusion. Some kids do, but it really varies. It took my younger daughter 4 infusions before she felt a lot better, and it took my older daughter 3. Some kids respond immediately, others take 6 months and many dose changes before they respond. It really depends.

The nice part is that the dosing and frequency of Remicade is more flexible than other biologics, so if it doesn't work at first, don't panic. Some kids need higher doses and more frequent infusions.

We had no side effects from Remicade. My girls got Tylenol and Benadryl as pre-meds, and the Benadryl made them tired. That's really it.

My girls usually took an ipad or book for the infusions. They also had TVs at our hospital. And my girls liked to nap too. It wasn't bad at all - the nurses fuss over the kids and my girls liked the day off from school.

Good luck!!
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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
05-17-2017, 07:32 PM   #4
pdx
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Hope it goes well!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
05-18-2017, 03:24 AM   #5
Jane and Nick
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My son just received his second loading dose he is 15.
He began to feel better after the first dose but the symptoms came back slowly, we are now two weeks after his second dose and he is feeling well, his appetite has improved and his fissures have begun healing.
His blood test showed his white cells to be the lower side of normal and the doctor asked us to be conscious of moving away from obviously sick people and to increase hand washing. My son also takes AZA so a double whammy of immno suppression.
We took a lap top, and his phone for his music.
We didn't receive any Benadryl or panadol just the saline flush before and after.
Good luck, I hope it works wonders for your son.
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DOB 13/8/2001
Height 5ft 2" 48 kg
Salofalk x3 twice a day
Imuran 100mg
05-18-2017, 02:40 PM   #6
Farmwife
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True, my girl had been on Remicade for around 2 years.
Healthiest in the family!

I just bring my work. My girl watches movies on the iPad they provide.
I hope it goes well
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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
05-18-2017, 06:36 PM   #7
MichaelaBrooke
 
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Location: Mississippi

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I've been on it as well as Imuran for close to a year and almost never get sick. I am also a nursing student so I'm exposed to quite a bit. So don't worry too much about it.

I feel extremely tired after my infusions. I don't take the benadryl. I usually go home and sleep. The next next day I'm still a little tired, as well.

During my infusions I either sleep, play on my phone, or study.

I started seeing improvement after my 4 dose. That includes the induction period.

__________________
Prednisone since April - currently tappering
On Remicade and Imuran 100mg
05-19-2017, 08:43 AM   #8
polly13
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Lucy was on remicade for a short period of time but she had a huge bounce after the first infusion which slowly faded, same after second and third then it stopped working, moved to humira no major bounce much more of a slow burner, took about 6 months to fully resovle her symptoms. In total she has been on biologics for over 4 years and she the least sick of my four, she gets less colds, coughs etc. gets the flu jab every year. When she gets sick (about once a year - it tends to hit her harded though). Hope the remicade works for you,
05-19-2017, 09:53 AM   #9
Iamlunatic
 
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Location: Dallas, Texas

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If he likes to nap, the blankets they have at my office don't offer much warmth, so I'd suggest bringing your own blanket and a small pillow. And I alw aya get food before and bring it in, whether it be snacks for chicken minis from chickfila. And I either study, or I read, or I watch Netflix, but almost always end up falling asleep. 19 year old who's been receiving infusions since 12 years old

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