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Crohn's Disease Forum » Parents of Kids with IBD » Flare 10 days before remicade


04-07-2013, 11:31 PM   #1
araceli
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Flare 10 days before remicade

My daughter is schedule for her first eight week remicade infusion next Thursday, a few days ago she started to have flare up symptoms. About a month ago she stopped prednisone. Any advice, comment or ideas welcome.

Wednesday my son is having a Colo/endoscopy. Gi thinks due to his symptoms with joints, better make sure he does not have Crohn's also. Of course He does not have it. no no no no. I need a break.
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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.
04-07-2013, 11:36 PM   #2
jmckinley
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So sorry about everything that is going on! I hope that your son's scope shows no sign of IBD!

I would call the GI tomorrow to let them know she is having symptoms. Maybe they could do a short pred round to get you to the next infusion. Another possibility would be to eat a very bland diet or do EN until the next infusion. But I would definitely check in with dr.
04-08-2013, 01:41 AM   #3
CarolinAlaska
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Sorry I don't have any advice. I'm glad they are checking your son, but I think you'd probably be worried about it long before now if he had any symptoms remotely Crohn's-ish. It seems I see Crohn's in all my kids in this symptom or that one. He'll come out just fine!
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-08-2013, 03:56 AM   #4
polly13
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Glad they are checking your son hopefully you will get a break and he is ok. Lucy started to flare about two weeks ago which was also about two weeks before her infusion the GI has decided to give her six weekly infusions going forward so the might do something similar with you. Felt quite reassured by the GI on Friday.
04-08-2013, 04:12 AM   #5
my little penguin
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We did infusions every six weeks when DS started to flare about 6 weeks about from his last infusion.
The every 8 weeks is the maximum time allowed between infusions but most vary from 5 to 8 weeks it should be an individual thing.
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04-08-2013, 07:13 AM   #6
crohnsinct
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What she said^^^.

There are only a few kids at our infusion center on the 8 week schedule. The schedule and dosage usually takes a while to figure out. She is probably metabolising the Remi quickly. Call the GI and report symptoms.

It took us 5 months to figure out a schedule and dosage that would work for our daughter. She is every 5 weeks at "max" dose (which is really just the adult 10 whatever the measurement is dose).

Our doc also kept our daughter on prednisone with a very slow wean and a lot of up and down until we got the Remi schedule worked out.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-08-2013, 09:59 AM   #7
araceli
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Thanks everybody. I will call GI as soon as they open. Asacol is waving at me from the toilet, so she is not getting the med to work. And hopefully my son comes clear. He does not have same symptoms as my daughter. On the opposite, very constipated. He has fecal impactation. Vitamin D low for both of them, lower in my son. I well let you know how everything goes. Thanks a million for the reply. Honestly, this forum is the only thing that keeps me sane. LOL I think I am sane, maybe not.
04-08-2013, 10:09 AM   #8
Tesscorm
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I can't add to the advice, just the hugs... it truly can seem overwhelming at times!

I truly hope only good news comes from your son's scope!!!
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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
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