Crohn's Disease Forum » Parents of Kids with IBD » 3 for the price of 1.


04-08-2019, 05:53 PM   #1
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
3 for the price of 1.

Hi all,
I haven’t been on in a while. I have been taking a break. Life has been rough. We just found out we might have a 3rd kid with Crohn’s.
My son has not been having symptoms but wasn’t growing. We went to the endocrinologist for an evaluation and they did a fecal calprotectin as part of the workup and guess what?
The only thing that came back abnormal was the fecal calprotectin.
So guess who’s getting a colonoscopy tomorrow?
Really hoping this is a lab mixup
My older daughter on the other hand is doing really well on Stelara.
My little daughter suddenly wasn’t doing well at all. She had a colonoscopy and it wasn’t good so she is going to be starting Stelara as well. I took a few weeks to get approval but we finally got it and she will be getting her infusion tomorrow.
Between the kids issues and my illness it has been a rough few months.
Trying to stay strong and taking it hour by hour.
__________________

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.
04-08-2019, 08:05 PM   #2
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
 
Join Date: Apr 2013
Location: Montréal, Quebec

My Support Groups:
wow, Im sorry to hear that... quite a lot indeed to deal with. You are courageous. Hope the scope goes well tomorrow. let us know how it goes. Hoping nothing serious is going on.
__________________
''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: Humira
Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only, Vitamin D + B12 shots
Past meds: prednisone 50mg, 5-ASA (pill, rectal), cortifoam, cortenema, Imuran, Purinethol, methotrexate.
04-08-2019, 09:31 PM   #3
Trysha
Forum Monitor
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
How awful for you to have to endure maybe a third child with Crohns....lets hope it isnt so.
You need to take care of yourself with so much going on in your life.
Hoping for a negative scope tomorrow..
Feel better soon
Hugs
Trysha
04-08-2019, 11:42 PM   #4
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Oh no Kim! How high was the cal pro? Did they do a repeat test? Did the lab happen to say if they did a confirmation test. When my girls get their cal pro testing the lab retests anything over 500.

For my youngest the only test that showed anything was the cal pro and she also stopped growing and gaining weight. But she also had some miserable symptoms that they kept fluffing off as constipation.

I will say a prayer that the GI gets a good look and it is the best outcome possible.
__________________
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
04-09-2019, 10:20 AM   #5
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Hugs
Good luck today
Hope you get quick answers
__________________
DS - -Crohn's -Stelara -mtx
04-09-2019, 02:04 PM   #6
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Good news, scopes were clean by the naked eye! Now we just wait for the biopsies!! Fingers crossed that they are clean as well!!!
Now in the infusion center. My younger one is getting the first dose of Stelara.
We are having a two for one deal today at the hospital!
04-09-2019, 02:21 PM   #7
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Glad it looks clean at least
Fingers crossed for fast biopsy results
04-10-2019, 09:29 AM   #8
Jelly loves Peanut butter
Senior Member
 
Join Date: Nov 2016
Location: Southern California

My Support Groups:
Sorry to hear this😢😢 Hope everything turns out ok ❤️💜💙
__________________

Mom of Lincoln (age 12)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
04-11-2019, 08:14 AM   #9
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
Great the scopes look clean, what a nightmare for you. Hope the infusion goes well today. xxx
04-12-2019, 01:21 PM   #10
Maya142
Forum Monitor
 
Maya142's Avatar
So glad the scopes looked clean!! Hope his biopsies are clean too - fingers crossed!
__________________
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
04-12-2019, 03:31 PM   #11
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
Just hugs.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » 3 for the price of 1.
Thread Tools


All times are GMT -5. The time now is 10:50 AM.
Copyright 2006-2017 Crohnsforum.com