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Crohn's Disease Forum » Parents of Kids with IBD » Imuran... here we go!


 
01-20-2016, 04:22 PM   #151
Farmwife
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Tomorrow Grace turns 7!!!
She's already planned the day down to the epic size party she wants with her stuffed animals.

However, it will be a no food party as she's on formula.
We meant with the new GI NP
and she doesn't think Grace has anything serious stomach wise because
she would be vomiting non stop.
But does want Grace to stay on formula to give everything time to settle.
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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
01-20-2016, 04:24 PM   #152
Maya142
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You can have Gastroparesis without vomiting. M only vomited rarely and her gastric emptying test showed clear Gastroparesis. Can you get a second opinion? Or just ask for the gastric emptying test?

Hope she has a happy birthday!!
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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
01-20-2016, 04:49 PM   #153
pdx
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Happy birthday, Grace!
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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
01-20-2016, 04:52 PM   #154
Jmrogers4
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Happy Birthday Princess Grace
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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
01-20-2016, 10:32 PM   #155
my little penguin
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Happy birthday
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DS - -Crohn's -Stelara -mtx-IVIG
01-21-2016, 04:35 AM   #156
Sascot
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Happy Birthday to Grace
01-21-2016, 11:12 AM   #157
my little penguin
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Why are you seeing an NP instead of a Gi ???
We see a np in other specialities where Ds has minor issues but not things that there are major issues like Gi or Rheumo ?
Last time I read your posts grace seemed complicated
01-21-2016, 11:31 AM   #158
CarolinAlaska
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Carol
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.
01-21-2016, 03:32 PM   #159
Farmwife
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The GI didn't come to our area this time. It was her NP.
I've already received an email back from the GI discussing points we talked about.
Nothing brought up on her nausea but I'll be calling next week with an update to the GI.


Grace is so happy, she got a big girl bike but she has to go to the doctors this afternoon because her urine is either dark yellow or slightly green"ish". I'm thinking Uti.
01-21-2016, 05:11 PM   #160
CarolinAlaska
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Hug
01-21-2016, 07:01 PM   #161
Tesscorm
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Happy Birthday!!!
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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
01-21-2016, 07:07 PM   #162
Farmwife
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UTI with possible kidneys involvement. We won't know until 24 hour mark.
We were sent home with a huge list to watch for.
She's place on antibiotic every 8 hours for the next 8 days.
Other than that she's happy. Ya wouldn't know she has any issues.

She was hilarious and stretched out on the doctors table and announced...
This is so NOT how to spend my birthday!!!
01-21-2016, 07:18 PM   #163
my little penguin
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Does she have a nephrologist or urologist for as often as she has uti and kidney issues ?
01-21-2016, 10:12 PM   #164
Pilgrim
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UTI with possible kidneys involvement. We won't know until 24 hour mark.
We were sent home with a huge list to watch for.
She's place on antibiotic every 8 hours for the next 8 days.
Other than that she's happy. Ya wouldn't know she has any issues.

She was hilarious and stretched out on the doctors table and announced...
This is so NOT how to spend my birthday!!!
Love it! Princess for life! You have some plan to trick future suitors?

Hope she feels better soon.
01-22-2016, 04:06 AM   #165
Sascot
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Hope the antibiotics kick in soon, glad she is happy and loves her bike. I do miss birthdays from when they were younger, they get so excited about their presents.
01-22-2016, 06:48 AM   #166
CarolinAlaska
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Poor girl! She is right! I hope you didn't have to be there long.
01-22-2016, 07:55 PM   #167
Farmwife
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The urine culture came back with e.coli. Good thing we took her in!!! Doors uti's clear up quick for your kids?
01-22-2016, 09:43 PM   #168
Maya142
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M had a UTI about a year ago. It wasn't bad at all though - she was only on antibiotics for 5 days I think and after that she was fine.

Hope Grace feels better soon!
01-23-2016, 10:25 PM   #169
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Happy Birthday Grace!!!!!!
I hope she feels better fast!!!!!
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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.
01-24-2016, 11:40 PM   #170
CarolinAlaska
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They're pretty easy to treat. Is your daughter doing better?
01-25-2016, 01:08 AM   #171
Catherine
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My middle daughter was on antibiotics for 12 months for UTI. But she already had scarring on one kidney from a single kidney infection at 2 years of age.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
02-12-2016, 06:10 PM   #172
Farmwife
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So Grace had a rheumatologist and GI visit a week or so ago.
Under the GI's instructions Grace finished anther round of EEN.
She did great and the pain went away ( for the most part).
But.....................
We tried putting Grace on a limited food again but right back to nausea and pain.
I can't figure it out.
I guess it's back to EEN and a talk with a dietitian.
The GI said scopes will be in her future if we can't get this under control.

Rheumatologist land........................
Grace had yet another new dx of JIA ( juvenile idiopathic arthritis) with ERA (enthesitis-related arthritis). Not surprised but still hate it! He did say that Grace is special because mostly boys get this type. gee I'm thrilled!!!!

I pray y'all are doing well. I always check in when I can. Hugs to all.
02-12-2016, 06:21 PM   #173
Maya142
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My girls both have that type of arthritis. That is the same as JSpA. It is more common in boys, but we have met MANY girls with it over the years. The treatment is the same - anti-TNFs and if peripheral joints are involved, immunomodulators like MTX or Sulfasalazine. NSAIDs are used in kids without IBD usually.

Have you asked about the gastric emptying test? Scopes won't show gastroparesis, if that is the problems.

Wanted to add that it is quite common for young kids to be diagnosed with polyarticular JIA and then switch categories as they get a little older and develop more JSpA like symptoms - like SI joint pain or enthesitis. With very little kids, it is often hard to distinguish between the subtypes and the arthritis becomes more "differentiated" as they get older.
02-12-2016, 07:12 PM   #174
my little penguin
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^^^^ yeah that
JIA is just the bigger term where all the subtypes fall under
Basically any kid who has Ibd automatically gets the JSpA dx when they fall under JIA umbrella .
As Maya142 said all the same treatment .
Did they test for hla b27 ?


When you say limited food
Is it by the amount of calories , type of food ?
Number of times eating , length of time and calories between meals , fat/fiber content etc???

With Ds we had to only add one new food for a few days - make sure he tolerated it then add a different food and not a combo

It took a while ( months ) to figure out foods that were just not tolerated at all

Good luck
02-15-2016, 12:51 PM   #175
Farmwife
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Sorry for the last reply, Grace got sick over the weekend.

Limited as in very few foods that she's even willing to eat ( rice, chicken, chicken hot dogs, yogurt ( the special kind that helps the gut), salted crackers with peanut butter).
We've been thru this all before. For a year we did slow reentry to food when she was 4-5. That why she had her feeding tube. Worked with a dietitian back than too.
But we might have to do another like you've done.
Maya, no mention of the test yet but when we meet in a few weeks I'll know better on how she's doing. I'm curious on what it will show.
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