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Crohn's Disease Forum » Parents of Kids with IBD » First Remicade tomorrow/MRI results!


 
11-29-2012, 12:40 PM   #1
Aniuko
 
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First Remicade tomorrow/MRI results!

I need all the good vibes, warm thoughts, prayers and fingers crossed and whatever you can give. Kasia has her first Remicade tomorrow morning with no breakfast and no food during the infusion (German thing I guess). I am very worried and scared and I think she is too. I sent her to her friend to make cupcakes for Xmas market but I know she thinks about it a lot. I will let you know tomorrow evening how it went!

I guess I will have ANOTHER glass of wine and will stop reading scary stuff about Remicade.

There is also a piece of good news. I got Kasia's MRI results today and as much as I cannot figure out the CD imagine, the description says that the CD hasn't spread out anywhere else other than the "old" terminal ileum. I guess that's good, right?
11-29-2012, 12:50 PM   #2
Farmwife
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Ya! Good news about the MRI.

Prays coming your way for a good infusion!
I hope she enjoys the cookies, if she gets any.
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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
11-29-2012, 12:55 PM   #3
muppet
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Good luck with the infusion! Don't sweat it, reactions are very rare and the staff knows what to do if there is one. What you should do is keep an eye out for any "slow" reaction. Keep vigilant for unusual itching, rash, high fever, dizziness... pretty much anything. Take notes, with dates. Call the doc if you get worried even a little, and read your little notebook to him/her. :-)
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11-29-2012, 12:55 PM   #4
my little penguin
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You will be in my thoughts.
Bring food just in case . Blood sugar tends to drop so DS eats constantly during his.
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11-29-2012, 12:59 PM   #5
Aniuko
 
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You will be in my thoughts.
Bring food just in case . Blood sugar tends to drop so DS eats constantly during his.
I will bring something but they specifically told me not to. Strange, isn't it? I know it is a small thing to worry about but I know that those bavarian butter pretzels are comfort food for Kasia and it makes me mad she has to feel hungry during this stressful time...oh well...I am Polish - it's all about food!
11-29-2012, 01:05 PM   #6
muppet
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I know you didn't ask, but I have to mention, I can't eat any Polish food at all when I'm flaring or I'd be much, much worse off. It's all the fat, and grease, and butter... Have you talked to a dietician about how dietary modifications might help Kasia have a better outcome?
11-29-2012, 01:21 PM   #7
Jmrogers4
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Bavarian Butter Pretzels, Oh my gosh YUM! Sending you loads of support and prayers and whatever else you need. (I could send you a case of wine also)
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Jacqui

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
11-29-2012, 01:21 PM   #8
Aniuko
 
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We are all vegetarians and very healthy eaters, the only polish food we eat is pierogi with cheese. It is more about the ideology of eating - you mustn't ever have empty stomach, if you think you are done with your food, I will ask you again "what would you like to eat?". Quite a stereotype but about my own people so I guess I can :-).
11-29-2012, 01:31 PM   #9
QueenGothel
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My DD had a few Remicade infusions, the reading material can totally freak you out. Rowan never had any side effects from her infusions unfortunately it didn't keep her in remission. It was imaboveitall that said it best....these drugs can be scary. When they work, these "scary" drugs start to look more like baskets of kittens. I agree I hope it really helps get to remission. Best of luck!
11-29-2012, 02:01 PM   #10
kimmidwife
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Good luck we will be keeping you in our thoughts and prayers!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-29-2012, 02:03 PM   #11
muppet
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We are all vegetarians and very healthy eaters, the only polish food we eat is pierogi with cheese. It is more about the ideology of eating - you mustn't ever have empty stomach, if you think you are done with your food, I will ask you again "what would you like to eat?". Quite a stereotype but about my own people so I guess I can :-).
OK I feel like I'm picking on you here, but some vegetarian diets can be pretty harsh on some Crohn's sufferers. Some Crohn's sufferers do great with fiber, for example, and for others the opposite is true. I'm not sure of the ratio there, honestly. I know that a vegetarian diet that was nutritious and also Crohn's friendly would be nearly impossible to pull off for me and my daughter. I really suggest talking to a dietician if you can get to one, or do as much research as you can online if not. Lots of us really believe that diet is at least as important as medication for staying healthy with this disease. It's HUGE for me.
11-29-2012, 02:48 PM   #12
Aniuko
 
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OK I feel like I'm picking on you here, but some vegetarian diets can be pretty harsh on some Crohn's sufferers. Some Crohn's sufferers do great with fiber, for example, and for others the opposite is true. I'm not sure of the ratio there, honestly. I know that a vegetarian diet that was nutritious and also Crohn's friendly would be nearly impossible to pull off for me and my daughter. I really suggest talking to a dietician if you can get to one, or do as much research as you can online if not. Lots of us really believe that diet is at least as important as medication for staying healthy with this disease. It's HUGE for me.
No, you are not picking on me at all. All info is appreciated. We have seen a dietician and after looking at what Kasia eats, she said we were fine. Except for apples and Indian food to which she is somewhat allergic (slight diarrhea) , she seems to have no problems with other food. Anyway...Kasia is "strange" because she never had any "belly" problems (diagnosed with CD 5 years ago), no pain, no loose or frequent stool, no blood in stool - nothing! She "only" wasn't growing and had a low fever for 6 months - that's why it was so difficult to diagnose. The docs here say that if she reacts badly to some food (not feeling well, stomach pains or toilet issues), we should stop but otherwise no restrictions right now. She feels and eats the best when are in Italy (only two hours away) - all the pastas and pizzas she gobbles like crazy with no stomach problems whatsoever. I guess I will listen to what her body tells us...whether or not I am right...no idea...
11-29-2012, 03:22 PM   #13
Jenn
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She sounds a lot like my son. We only discovered CD with his fistula. He did great on Remicade while it lasted and we saw a difference in just a few days, he was back to normal-kid energy. Best of luck to you!
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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
11-29-2012, 03:40 PM   #14
Tesscorm
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Good luck tomorrow! I will be thinking of you! I don't have experience with remicade but have read of many success stories here! Sending lots of hugs!
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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
11-29-2012, 05:57 PM   #15
crohnsinct
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Italian here and all about the food and wine!

Good luck tomorrow!
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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
11-29-2012, 06:29 PM   #16
Tink572
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Good luck with the infusion! Takes games, laptop, something to entertain you both. Hopefully the time will fly by and you'll be off for a huge lunch before you know it!
11-29-2012, 06:57 PM   #17
crohnsinct
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Forgot to mention...make sure she drinks lots of water before. THe more hydrated she is the easier the IV insertion will be and the easier any blood draws for testing will go. Also, when thirsty you sometimes feel hungry but it isn't hunger at all it is thirst...so have her stay hydrated before or if they nixed water as close to the stop point as possible.
11-29-2012, 07:34 PM   #18
Crohn's Mom
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Aniuko ~ my husbands family is Polish so I get you there !
I am not, but they have deemed me an honorary polock and say that I cook their favorites better than they did now ! LOL

Good luck with the infusion, I hope it is all uneventful for her ! Bring along the pretzel for a special treat after
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and Austin (18)
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11-29-2012, 07:57 PM   #19
Clash
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Sending good vibes your way!! Hoping everything is easy peasy for your sweetie and she gets great results!!
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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
11-30-2012, 02:36 PM   #20
Aniuko
 
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Thanks guys for all the vibes and prayers! The infusion went very well without any complication. They told us to observe her for the next 5-7 days for any flu like or unusual symptoms. I am so relieved it is over...for the next two weeks. She was very brave and much calmer than me. After the infusion she had a lot of energy and managed to go to our little American Xmas market....good sign I guess!

Thanks again for all the support! It would be much harder without you guys!
11-30-2012, 02:38 PM   #21
Tink572
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So glad to hear it went well! The first infusion is definitely the hardest--next time will be a piece of cake!
11-30-2012, 02:55 PM   #22
Jmrogers4
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Yay!!! I'm so glad it went well and she is feeling good. Hope she has lots of energy. I'll let Jack know he was asking me last night if she had her infusion yet.
11-30-2012, 03:01 PM   #23
Clash
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Glad to hear everything went well!!!
11-30-2012, 03:08 PM   #24
QueenGothel
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Nice to hear all went well.
11-30-2012, 03:13 PM   #25
Farmwife
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Wonderful!
11-30-2012, 03:28 PM   #26
Aniuko
 
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Yay!!! I'm so glad it went well and she is feeling good. Hope she has lots of energy. I'll let Jack know he was asking me last night if she had her infusion yet.
I just saw Kasia writing to Jack. I am glad she has someone to share things like this with.
11-30-2012, 03:36 PM   #27
Clash
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Jmrogers4 and Aniuko I think it is awesome that ya'll have set up the E-penpal system for Jack and Kasia! How great that they can share their experiences, CD related and beyond! Part of what makes this forum so awesome, I think!
12-01-2012, 04:47 AM   #28
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That's really great news! Hope she continues to get better and better!
12-01-2012, 07:21 PM   #29
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my son has had two sessions so far. They gave him medicine to make him sleepy so he was out the whole 4 hrs. You just sit there so I suggest bringing something to do. You guys will be fine
12-01-2012, 10:22 PM   #30
kimmidwife
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Glad to hear it went well!! (My daughter was having fun the smilies)
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