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05-15-2016, 06:02 PM   #181
CarolinAlaska
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Glad to know he is still doing well.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
07-06-2016, 06:51 AM   #182
DustyKat
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Update re: Sarah.

On the 10th of this month it will be 10 years since Sarah’s surgery and she continues to be remission.

BUT the other big news is she is now living in Japan, and is married!

It was a rather whirlwind romance but she insists that when ya know ya know. Anyway the fact of the matter is I now will have to curtail my bagging on you Yanks! Yes, she has married an American serviceman! They will be coming out to Oz for a visit in August so I will meet the son in law then, plenty of time to modify my behaviour.

Dusty.
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07-06-2016, 07:49 AM   #183
Clash
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Nooooo, modified Dusty behavior?!?! No way! There is only one Dusty...you can't improve upon perfection! Haha

Congrats on gaining a son-in-law and the continued remission!
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Clash
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
07-06-2016, 08:48 AM   #184
Tesscorm
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Wow, that is quite the 'success' update! Congratulations to you and to her! (And, to he, he's not only gained a wonderful wife but a one-of-a-kind MIL! ) That is just GREAT news, I bet you can't wait to get a look at him!

And, a modified Dusty??? NEVER!

Just so very happy for all of you!!
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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
07-06-2016, 09:19 AM   #185
my little penguin
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Wow !!! Such great news
Congratulations
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07-06-2016, 04:07 PM   #186
kimmidwife
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Wow that is amazing news! Very excited for her as she begging on this new adventure! Long may her remission continue! I am retired Air Force, what service is he?
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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.
07-10-2016, 02:45 PM   #187
Sascot
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Great news, doing well and married!! Congrats to her!
07-10-2016, 03:13 PM   #188
ronroush7
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Congratulations
07-16-2016, 10:31 PM   #189
Jmrogers4
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Wow, congratulations to Sarah
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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
08-05-2016, 07:55 PM   #190
DustyKat
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He is army, Kim.
08-05-2016, 08:38 PM   #191
Trysha
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That must have been a whirlwind surprise for you Dusty...amazing news.
You are a wonderful mother bringing your children through such an awful condition but allowing the freedom to grow up to independence.
Congratulations.....to you and the happy couple...may it be a lifelong success.
Trysha
08-05-2016, 08:39 PM   #192
ronroush7
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That must have been a whirlwind surprise for you Dusty...amazing news.
You are a wonderful mother bringing your children through such an awful condition but allowing the freedom to grow up to independence.
Congratulations.....to you and the happy couple...may it be a lifelong success.
Trysha
Amen

08-05-2016, 08:46 PM   #193
Farmwife
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She married an American

That's as bad as if Grace married a city slicker.

I'm glad she's feeling well and enjoy your visit when they come.
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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
08-05-2016, 09:05 PM   #194
DustyKat
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Ugh! Tell me about Fw!
08-06-2016, 08:05 AM   #195
CrohnsKidMom
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Such exciting new! Congratulations!
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Son diagnosed with Crohn's March 2013, at age 8
08-07-2016, 05:18 PM   #196
kimmidwife
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Dusty,
That is awesome! Go Army!!!! I was Air Force!
12-08-2016, 12:08 PM   #197
Jmrogers4
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Seems like it's been too long since anyone has posted in this thread so I thought I would give it a "bump"
Jack is one month shy from hitting his 3rd anniversary of starting remicade and continues to do better than we could have hoped. He is 3 months away from 7 years since diagnosis and I honestly thought we would not be at this point.
He is in his senior (final) year of high school and halfway through it at that. He is more concerned about world and local issues than his disease, mostly because he barely thinks about it at all anymore usually only the day of an infusion. He did write his college essay with a nod to crohn's but only in that it has given him the opportunity to discover his leadership skills through mentoring others with crohn's and acting as a leader at camp.
We are no longer worried about his growth he is just a hair over 6 foot tall, I think we were all hoping he would get to 5'9 since he was just a smidge over 5' at the start.
Jack is looking forward to going to college next year and hopes to someday be a pediatric GI.
We had discussed switching to humira for college since it would most likely be easier to do in college and not have to find someplace to do infusions (our insurance wants them done at Walgreens/Option Care infusion centers of which both colleges he is considering there is not one near) but I think we'll just figure out and continue on with the Remicade as long as we can.
12-08-2016, 12:11 PM   #198
ronroush7
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Seems like it's been too long since anyone has posted in this thread so I thought I would give it a "bump"
Jack is one month shy from hitting his 3rd anniversary of starting remicade and continues to do better than we could have hoped. He is 3 months away from 7 years since diagnosis and I honestly thought we would not be at this point.
He is in his senior (final) year of high school and halfway through it at that. He is more concerned about world and local issues than his disease, mostly because he barely thinks about it at all anymore usually only the day of an infusion. He did write his college essay with a nod to crohn's but only in that it has given him the opportunity to discover his leadership skills through mentoring others with crohn's and acting as a leader at camp.
We are no longer worried about his growth he is just a hair over 6 foot tall, I think we were all hoping he would get to 5'9 since he was just a smidge over 5' at the start.
Jack is looking forward to going to college next year and hopes to someday be a pediatric GI.
We had discussed switching to humira for college since it would most likely be easier to do in college and not have to find someplace to do infusions (our insurance wants them done at Walgreens/Option Care infusion centers of which both colleges he is considering there is not one near) but I think we'll just figure out and continue on with the Remicade as long as we can.
Great news. Thanks for sharing.

12-08-2016, 12:40 PM   #199
pdx
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That is so great that Jack wants to be a pediatric GI! Hope you can figure out a way to continue with Remicade in college--it seems to be working so well for him.
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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
12-08-2016, 02:46 PM   #200
Maya142
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That is wonderful - I think it's great that he wants to be a pediatric GI! I hope you're able to get the infusions sorted out - it makes sense to stick with Remicade since he's doing great on it.
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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
12-08-2016, 04:46 PM   #201
kimmidwife
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That is so great to hear!!!
12-08-2016, 05:28 PM   #202
Farmwife
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I remembered it all about Jack.
Wasn't he worried he wouldn't get taller than his little brother?
How time flies.
So great to hear some good news.
12-09-2016, 09:40 AM   #203
CarolinAlaska
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I remember when Jaedyn and Jack had so much in common. Your doctor switched him to Remicade and my daughter's doctors are still not making the move. Your son is doing great. My daughter is still suffering. I wish we had the same success story... I'm really glad for your son's success. Thanks for the update.
12-09-2016, 10:04 AM   #204
Jmrogers4
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My Christmas Hannukah, Kwanza, Ramadan, whatever you celebrate wish for all these kids is of course to find a cure but in the meantime long and lasting remission. I know I haven't been super active on here lately but do know even when I'm not posting I try and check in to see how everyone is.
I'm so thankful for my son's doctor who looked beyond labs and didn't just brush my concerns off.
12-09-2016, 02:02 PM   #205
Tesscorm
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What a great update!!! It's so nice to read it!

And, my wish is also that all the parents will soon be posting their own success stories! There are too many who have not yet reached lasting remission. Whether it's a matter of still being in the 'trial and error' stage, or slow moving GIs, or a flare in the middle of remission, I am praying that all is resolved very soon!
02-10-2017, 04:25 PM   #206
Jenn
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We are at 5 years success on Humira!

Still knocking on wood.... and shocked to reflect that's a third of my son's life. :/
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) 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
02-10-2017, 04:26 PM   #207
ronroush7
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We are at 5 years success on Humira!

Still knocking on wood.... and shocked to reflect that's a third of my son's life. :/
That is great news

02-10-2017, 05:23 PM   #208
pdx
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We are at 5 years success on Humira!

Still knocking on wood.... and shocked to reflect that's a third of my son's life. :/
So glad to hear this, Jenn. Thanks for the update.
02-11-2017, 03:39 PM   #209
vtfamily
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I remembered it all about Jack.
Wasn't he worried he wouldn't get taller than his little brother?
How time flies.
So great to hear some good news.
I know the feeling. When his younger siblings surpassed him in height and abilities, he tried to hide it, but it did take an emotional toll on Gus.

Coming up on four years on Stelara, and Gus is now making measurable progress on his growth chart. It is amazing to see the physical changes, but also a relief to see it on the chart...real, measurable, growth. He has jumped from the 5th percentile to the 15th percentile!

Even his GI doc noticed his body is maturing and he has the appearance of a young man, not a large boy.

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