Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Devynn's appt with new IBD team!


01-09-2013, 05:20 PM   #1
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
Devynn's appt with new IBD team!

Devynn has been transferred to the IBD team and we met with her nurse practitioner today. She was very nice. She took blood today, but said if Devynn continues to do well they will only do blood draws once a year. Right now she is going to go see them every 6 mos. If we have any problems in between I can call her and they will get her in right away. She also told us, that unless there are problems.. they won't redo her colonoscopy and endoscopy again for 8 years! That was the highlight of Devynn's day! lol
So everything looks good. The MRE looked good. It didn't show any active inflamation in the small bowel.
Devynn started on Sulfasalazine in Nov and has done very well. She has only had 2 stomach aches (as opposed to 5-7 days a week) and has complained of joint pain twice! Again, the joint pain is usually a few times a week at best. She said the Ulcerative Colitis is mild and that they also believe she may have irritable bowel syndrome. She was happy with Devynn's growth and said she looks good and her belly was nice and soft and not at all tender.
All in all a good appt, leaving us with hope that these meds might be working!! She said the plan is to keep her on them for 2 years minimum if things are going well.
I am praying that this is going to put her into remission and I will have my happy girl back!
I am SO thankful for this place, although it sucks that there is a need. But I have learned so much, and had so much support since finding you all. I hope I can be of as much support, as everyone has been to me. I have had my mind eased, my fears calmed, and met some wonderful friends. Thank you all.
__________________
Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-09-2013, 05:28 PM   #2
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Good news

I love good news

Long may it last
__________________
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
01-09-2013, 05:32 PM   #3
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
Thank you!! Me too!!
01-09-2013, 05:48 PM   #4
Jmrogers4
Moderator
 
Jmrogers4's Avatar
t iara:
Did I do enough.... That is fabulous news. Long may it continue.
__________________
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
01-09-2013, 06:14 PM   #5
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
Thank you!!
01-09-2013, 07:38 PM   #6
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Short of a cure, that's about as much as any of us could hope for!! Awesome for her and all your family!
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
01-09-2013, 08:47 PM   #7
S mom
Senior Member
 
S mom's Avatar
 
Join Date: Jan 2012
Location: Ontario

My Support Groups:
That's fantastic - and I second all those dancing emoticons above
01-09-2013, 08:54 PM   #8
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
Thank you!
01-09-2013, 08:54 PM   #9
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
Thank you
01-09-2013, 09:05 PM   #10
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Yippe for good news - awesome
__________________
DS - -Crohn's -Stelara -mtx-IVIG
01-09-2013, 10:05 PM   #11
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
So happy to hear good news!!! Yay!!!
__________________

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.

Last edited by kimmidwife; 01-09-2013 at 10:05 PM. Reason: Emoticon
01-09-2013, 10:10 PM   #12
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
Thank you MLP
Thank you Kim
01-09-2013, 10:46 PM   #13
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
What a great post! hope all continues to go well for a long time!
__________________
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
01-10-2013, 03:49 AM   #14
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Wow! What a fab update! I am sooooooooo happy for you both! May it keep on keeping on.



Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
01-10-2013, 05:45 AM   #15
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:


So happy for yous
01-10-2013, 11:09 AM   #16
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
Thank you Tess! I hope so too.
Thank you Dusty, I hope so too!
Thank you upsetmom
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Devynn's appt with new IBD team!
Thread Tools


All times are GMT -5. The time now is 12:13 AM.
Copyright 2006-2017 Crohnsforum.com