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Crohn's Disease Forum » Parents of Kids with IBD » Using Stelara For Children With Crohn's


 
03-29-2013, 06:02 AM   #31
AZMOM
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Yay!!!!!
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-29-2013, 07:30 AM   #32
Livilou
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That is wonderful news!!!!
03-29-2013, 10:14 AM   #33
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Fantastic news !
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and Austin (18)
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03-29-2013, 10:48 AM   #34
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Woohoo
So glad it seems to be working
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03-29-2013, 04:01 PM   #35
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I'm so glad to hear it and may it continue forever!
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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.
03-29-2013, 05:43 PM   #36
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Fabulous news! Glad Gus had a great time.
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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
05-02-2013, 04:41 PM   #37
vtfamily
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About the time Gus was due for his next dose of Stelara...we encountered some complications.

First, he developed a bacterial infection and went into septic shock. Had nothing to do with the Stelara. Most likely cause, fibrin clusters (small blood clots) around his PICC line. Docs sprang into action and took care of it quickly.

Second, his strictures were causing a tremendous amount of pain and we made the decision to remove the stricture surgically. The infection was cleared up in time for us to keep our original surgery date.

So, the big question with the Stelara was...should we give it before or after the surgery??? Circumstances ended up dictating that answer. He will receive the next dose of Stelara when we are discharged from the hospital. That will put it at about a week and a half after surgery.

I am really hopeful that Gus will finally have a, much deserved, remission!!! Between the Stelara and the surgery, I hope we will have some peace for a nice long time!!!

The next big challenge will be catching-up on four or five weeks worth of school work! Principal said we had the summer to catch up, but I really want him to be totally free this summer. He deserves it. He needs it.
06-09-2013, 12:55 AM   #38
vtfamily
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Time for an update.

Gus' surgery to remove the stricture at the terminal ileum went well. He started Stelara just before the surgery and has continued it since the surgery.

The medical community is still trying to figure out dosing and scheduling. Instead of receiving his injections every 12 weeks, the dosing has been moved up to every 4 weeks.

Gus is looking good, feeling good and enjoying food again. All things I haven't been able to say for a long, long, long time.

I don't want to jinx anything, but I'm feeling pretty good about Gus' chances for a break from his Crohn's...dare I even say...a remission!!!

Next dose due next week.

Will continue to post updates along the way.

Happy summer everyone!
06-09-2013, 01:00 AM   #39
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Hello!

My 17 year old daughter will also be starting Stelara very soon. She went to her follow up appointment at the Mayo Clinic today for a colonoscopy, and her colon does not look any better. She has been on Cimzia/6mp combo. Dr. Cangemi called in for the Stelara today and our Pharmacy called and said our insurance company (United Healthcare) approved it thank goodness, so they will be getting it in tomorrow. She will be starting out with 90 mg. I really hope this helps her. We have tried Remicade, Humira and Cimzia along with everything else under the sun!

Therese
Was wondering if your daughter started Stelara and how it's going??
Cheryl
06-09-2013, 01:01 AM   #40
upsetmom
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Thanks for the update!!!
I'm glad things are going good .....I hope it lasts forever...
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06-09-2013, 01:03 AM   #41
vtfamily
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Thanks for the update!!!
I'm glad things are going good .....I hope it lasts forever...
Thanks! Me too. But I'll take a summer "off" if it's all we get!
Cheryl
06-09-2013, 06:11 AM   #42
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Just read your other post and I am still smiling!

Onwards and Upwards!

Dusty.
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06-09-2013, 01:42 PM   #43
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Great news!
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06-09-2013, 02:17 PM   #44
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Cheryl,

Kayla has had two injections of Stelara and is getting the third injection today. Four weeks apart and 90mg! She is doing great! No side effects, feeling fine, eating etc. We go back to the Mayo clinic in Jax next week for her followup since starting Stelara!

Therese
06-12-2013, 02:16 AM   #45
vtfamily
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Kayla has had two injections of Stelara and is getting the third injection today. Four weeks apart and 90mg! She is doing great! No side effects, feeling fine, eating etc. We go back to the Mayo clinic in Jax next week for her followup since starting Stelara!

Therese
Therese,

That's great! Gus is getting 45mg every 8 weeks. He weighs 80 pounds (finally...was 65 pounds forever). Since the med is still in trials, our doc(s) want to proceed cautiously.

I'm glad your daughter is doing well on it! Can't wait to hear more.

Cheryl

Last edited by vtfamily; 06-12-2013 at 11:25 PM.
06-19-2013, 01:37 AM   #46
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Just how "good" does Gus feel???

We spent an hour at a trampoline party tonight. Trampolines all over the floors and walls. A lot of jumping, trampoline dodge ball, foam pits, etc...

He had a blast! Energy lasted the entire time. Ate before we went to the party AND wanted to eat again after! HOLY COW! I can't remember when he actually wanted to eat so often (and without pain) and had so much energy!
06-19-2013, 05:58 AM   #47
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Yayyyy! That is so great to hear!!! May it last forever!! Kim
09-08-2013, 11:55 PM   #48
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Well, Gus has complete his first week back at school...with NO problems! Whew! He is also trying out for the volleyball team. This is huge since he hasn't had the energy or stamina to even attempt real sports in about 8 years. Not sure if he will make the team, but I am so proud of him for getting out there!
09-10-2013, 10:38 AM   #49
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Great news for Gus!! Kayla has been doing great on Stelara also! She is up in Gainesville at UF for College and is feeling really well! She now gets the Stelara injection every 8 weeks (90mg). I am so hoping that is gonna keep working!!
09-10-2013, 04:39 PM   #50
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Fab news!
09-10-2013, 09:18 PM   #51
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Wow. What a ride you and Gus have had....So glad to hear that he is doing so well now. May it continue!!!!
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10-07-2013, 03:47 AM   #52
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I can't believe the first quarter of the school year has come and gone. Even better, without any Crohn's events either!!

Gus goes for his first upper and lower GI scopes this week since his surgery. I have mixed feelings about it. I'm hoping they don't see any new affected areas. At the same time, it is always so difficult to pin-point his problem areas that, if there is something new going on, I don't want them to miss it.

It would be easier to relax about the scope if he wasn't already showing sketchy/intermittent signs of active disease.
10-07-2013, 04:25 AM   #53
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Good luck with the scopes Cheryl!

I hope all proves to be well but as you say, if there is something grumbling away there I hope they pick up!

Dusty. xxx
10-07-2013, 04:57 AM   #54
upsetmom
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Good luck with the scopes!
10-07-2013, 05:09 AM   #55
my little penguin
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Good luck!!!!
10-07-2013, 09:56 AM   #56
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Good luck
10-07-2013, 04:07 PM   #57
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Good luck for the scopes!
10-07-2013, 05:05 PM   #58
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Good luck with the scopes!!!
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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.
11-04-2013, 01:39 AM   #59
vtfamily
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Sorry for the delay in reporting on the scopes...nothing is ever simple with Crohn's kids, is it?!

Generally speaking, the scopes went well. No signs of inflammation, no ulcers, no redness. Yippee.

However, and there always seems to be a however, the doctor could not get the scope past the colon and into the terminal ileum because of a blockage. This is the same area Gus had re-sected back in May. He tried several different ways to push the scope through, but no luck. The mystery was trying to figure out how anything is getting through and why Gus isn't in extreme pain.

This really threw his GI doc for a loop! He was even thinking that Gus might be looking at a colostomy/collectomy bag in the next few (3-5) years.

We all remained calm and prepared to take the situation step-by-step.

First step, an MRE. The MRE showed everything is "normal." Really? Normal? I guess the radiologist and I have very different definitions of "normal." I take it to mean that digested material is making it's way through. The GI doctor also talked to the surgeon and learned that the re-section was done as a "side-to-side" (rather than an "end-to-end") astimosis.

We still need to figure out how we are going to get a good look at the terminal ileum in the future, but for now...I'll take what I can get. Gus is not in pain and has not missed any school days.

I'll explore the issue with the GI doctor further the next time Gus has an appointment.

Until next time,
Cheryl
11-16-2013, 05:07 PM   #60
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Haven't heard any updates in a while...how are the kids doing with Stelara?
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