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Crohn's Disease Forum » Parents of Kids with IBD » We are tapering! Hooray!


 
08-18-2013, 09:03 PM   #1
DanceMom
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We are tapering! Hooray!

A's GI called Friday evening and asked for an update. She's done considerably well the last few days, even with starting back to school. Our only real problem now is the raging heartburn she gets. She still fatigues easily but even that is improving.

Because she's doing so much better he agreed that we could start tapering the Prednisone! Hallelujah! We started Friday night, and will decrease by 5 mg/week. Saturday morning I noticed a definite change in mood but we can deal with that. She's had 1 enormous BM but that does happen from time to time. I'm just holding my breath until she is completely off the Prednisone! Praying for no hiccups!

We are also tapering the Neurontin and will be done in a few days. It just didn't seem to be very helpful for her and GI agreed we could stop. Bentyl and Zofran provide the best relief for her so we'll stick with that. We are also increasing the Prilosec to 20 mg twice a day until the Prednisone is done.

Labs to be done in a few days. Hoping we hold steady with no complications!!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-18-2013, 09:15 PM   #2
Farmwife
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Ya for the taper.

I pray all 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
08-18-2013, 11:25 PM   #3
upsetmom
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I hope everything goes well.
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Daughter dx CD March2012...
(aged 14)

Currently on:
Remicade
125mg Imuran
3000mg Pentasa
600mg Calcium


Dx Premature Ovarian Failure 2014
On Estrogen and Provera


08-18-2013, 11:28 PM   #4
Tesscorm
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Hope the taper goes smoothly!!
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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
08-19-2013, 12:07 AM   #5
Mehita
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So happy for you!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
08-19-2013, 12:38 AM   #6
Jane and Nick
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Yipiee ! I know how exciting it is. Take it slow, slow, slow. We actually started with 5mg taper then went to 2.5 mg, tablets were easy to split, took twice as long but it seemed to work, we have only had one small hic up so far. Good luck.
X
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DOB 13/8/2001
Height 5ft 2" 48 kg
Salofalk x3 twice a day
Imuran 100mg
08-19-2013, 12:48 AM   #7
BlessingsK
 
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Tapering prayers! I just gratefully threw away some pred pieces from when I was tapering in July. No pred for over a month, may that encourage you.
08-19-2013, 03:02 AM   #8
Stephyjane
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Excellent news
I agree slowly slowly. Such a good feeling to be heading in the right direction.
I hope her heartburn improves too soon. X
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Mum to Ella diagnosed with Crohn's disease June 2012 aged 9yrs


Medications:
125mg Azathioprine

3 monthly bloods and calprotectin.

Past Medications

Lansoprazole 30mg
Ferrous Fumerate iron

Infliximab infusion on hold due to reactions.
Scopes being done Mar 2014 to determine whether Ella can maintain without infliximab.
Scopes showed remission, biopsies showed mild inflammation.
Sulfasalazine stopped due to neutropenia
E.N tried and failed.
08-19-2013, 04:41 AM   #9
Sascot
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Great! Truly hope it all goes smoothly over the taper.
08-19-2013, 05:30 AM   #10
DustyKat
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Woohoo!

Sending you mega loads of luck that the taper is smooth one! and everything crossed!

Dusty. xxx
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Mum of 2 kids with Crohn's.
08-19-2013, 06:57 AM   #11
CrohnsKidMom
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Congrats DanceMom! It's nice to get off the Prednisone. My son started his final week of taper today. It's been a very slow process, but we made it! Now here's hoping that MTX keeps on working!
All the best to you as well! I hope it's a smooth ride!
08-19-2013, 06:53 PM   #12
DanceMom
Senior Member
Hoping we don't have a problem here.....

The last few days I've noticed A scratching at her bottom and complaining that it itched. Admittedly, I ignored it because I was in my "happy place". Tonight she asked me to look because she said it felt like there was a sore there. Sure enough there is a very small crack and the area is very red. I put some butt paste on it which she said was soothing. Is this "crack" from scratching?
08-19-2013, 07:10 PM   #13
my little penguin
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Anal fissures are common with crohn's .
Not sure if that is it or not.
Hope its a minor blip.
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08-19-2013, 07:13 PM   #14
DanceMom
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Do anal fissures itch MLP? Is there a particular treatment? Whatever it is I believe it is in the beginning stages.
08-19-2013, 07:19 PM   #15
Maya142
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My daughter also complains about at itchy and painful bottom. We also use a butt paste but it doesn't really help much at all. She keeps saying where she puts the cream isn't where it hurts. Is it possible to have a fissure without bleeding? I don't know how to help her!
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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
08-19-2013, 07:19 PM   #16
araceli
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Call your GI and let them know. Hopefully is just from scratching.
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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.
08-19-2013, 07:37 PM   #17
my little penguin
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We use calmoseptine which helps sometimes but DS has ALOT of rectal issues so that area is a mess right now .
Not sure on the itching
08-19-2013, 08:28 PM   #18
CrohnsKidMom
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My son has an anal fissure and skin tag. The fissure isn't visible, although the GI seems to know where it is! I can see the skin tag though. My son sometimes has an "uncomfortable" feeling, like there's something there (um, a skin tag, maybe?!), and sometimes some minor itching. GI said it's likely due to the fissure. It was worse before he started MTX, as that makes his stools softer and less irritating to his bottom. Previously, when constipated, he would have bleeding when having a BM, and a sore bum afterward. The MTX has given us one nice side affect.
08-20-2013, 05:19 AM   #19
DustyKat
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Sitz baths can help with itching and healing but OTC cream wise sometimes if you move to a haemorrhoid/anal cream like Rectinol or Anusol it can help alleviate the itching and redness that often goes along with these type of things.

Dusty. xxx
08-20-2013, 05:47 AM   #20
Amy2
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Long time hemorrhoid sufferer...had a fissure and didn't even know it, until my dr. told me, but it healed on it's own, thankfully. I have a prescription for steroid suppositories, which are good for putting right where the pain is located.
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08-20-2013, 11:33 AM   #21
araceli
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In my daughter's case, we tried everything and did not work. Only thing that took away the pain, redness and itching, was aloe vera (the plant). She was on prednisone and asacol at the time and her gut issues were under control. She was put in remicade due to the fissure and now is gone. She did not have any blood at first but later did.
08-21-2013, 08:21 PM   #22
DanceMom
Senior Member
Taper still going well. Had labs drawn this morning so hopefully those look good. I forgot to check her bottom today but at least I didn't notice her digging at it! lol She definitely seems more tired lately but I guess that is to be expected with school being back in. It is a long day for her.

Something has got to be done about her poor lips though! Her bottom lip is swollen and has a nasty looking crack (fissure?) down it that randomly bursts and bleeds throughout the day/night. Trying to do some research on orofacial crohn's disease but I admit, some of it is over my head. Anyone have any experience with this? Inside her mouth looks fine, but her lips are really starting to bother her.
08-21-2013, 08:42 PM   #23
my little penguin
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http://www.rdhmag.com/articles/print...s-disease.html

This one should help
Does her lips look like those ?
08-21-2013, 08:50 PM   #24
DanceMom
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Looks similar to the orofacial granulomatosis. It only affects her bottom lip.
08-22-2013, 03:24 AM   #25
Jane and Nick
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Oh my goodness, Nick also suffers with swollen lips particularly his bottom one which has a crack that does not seem to want to heal. I never made the connection between this and his CD. This disease is just ridiculous ! I'm getting extremely pissed off with it ! Dancemom hope the taper continues to be smooth and thank you for the heads up on the new symptom, if you find a magic cure let me know.
08-22-2013, 08:32 AM   #26
DanceMom
Senior Member
Well, Hepatic Function Panel is back. The Alk Phos keeps getting lower and lower and I'm not sure if that is something to be concerned over or not. It was 88 last month and is now 62 (norm is 184-415). Her ALT is still high but not anything to stress about. It's 49 (norm is 8-24). Seems as if she's handling the 25/50mg of 6-mp pretty well! Still waiting on the other results to come in. If anyone knows anything about the low Alk Phos trend please chime in!
08-22-2013, 02:37 PM   #27
Maya142
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DanceMom - my daughter also has a low Alk Phos. She's quite a bit older than your daughter, so I don't really have to worry about her growth (I believe a high alk phos means your child is growing) but anyway, her pediatrician keeps telling us not to worry about it though she does say it is related to having Crohn's. She never specifies how it's related though. Sorry, not very helpful but just wanted to say we're in the same boat!
08-22-2013, 07:27 PM   #28
DanceMom
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All results are in....

GGT is 26 (norm is 3-22)
RDW is 15.9 (norm is 11-15)
Absolute Lymphocytes is 1162 (norm is 1500-6500)

Are any of those numbers concerning? I never can tell....

And I also need some input about this "moon face". Her cheeks got significantly larger after moving up to 40mg, but in the last 2 days or so they've practically doubled in size. The kids started making fun of her at school today and parents at dance were asking me if she was having an allergic reaction. Should they be swelling that much more if we are tapering? And should one be bigger than the other?
08-22-2013, 07:34 PM   #29
Farmwife
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Look in post 23. Is that what her lips look like???
08-22-2013, 07:34 PM   #30
Farmwife
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Oh wait I saw you answered. Sorry.


Call the GI and ask.
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