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Crohn's Disease Forum » Your Story » 12 year old daughter with Crohn's


03-21-2017, 10:41 AM   #1
ria.chada
 
Join Date: Mar 2017
Location: Pittsburgh, Pennsylvania
12 year old daughter with Crohn's

Hi, my daughter diagnosed with Crohn's in last May. she's 12 years old. At that time she had no symptoms except the inability to gain weight so pediatrician recommended seeing an Endocrinologist. Becuase my wife had Crohn's, Endocrinologist suspected she has Crohn's too, went to see a Gi, they confirmed she has Crohn's. From that time she's on Remicade, only first 3 doses of starter Remicade doses worked a little bit, she gained a little bit of weight after that they used Remicade doses for every 15 days, each time she got worst. So they decided to try Stelara. She's getting her first dose of Stelara on March 30, 2017. If anybody used Stelara for children before please share your experiences.
03-21-2017, 12:33 PM   #2
ronroush7
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Welcome. I am sorry your daughter has Crohns. There is a great section in here called Parents of Kids with IBD. You might want to check it out. I am going to tag Clash , Maya 142, my little penguin.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-21-2017, 12:34 PM   #3
Amac
 
Join Date: Mar 2017
Bless her I'v no experience really with any medication but I just wanted to send her support hope she gets the right treatment and can return to being a healthy teenager ❤
03-21-2017, 01:58 PM   #4
Maya142
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Hi and welcome. Check out the parent's forum - there are lots of parents with preteen or teenage girls. There is also lots of info there, including a lot of research.

Stelara is relatively new, so there are very few kids on it. Clash's son is on it, but he's the only one I can think of so far. It's not usually they next step after Remicade - usually Humira or Entyvio is tried before Stelara, because it is so new.

Remicade is also not usually given every 2 weeks...

Have you considered a second opinion? Cincinnati Children's is one of the best IBD centers and it's not too far from you.

Exclusive Enteral Nutrition might be a good option for you daughter - it's formula only, usually for 6-8 weeks. It can induce remission and actually works better than steroids for mucosal healing. It also helps kids gain weight and grow. Kids either drink the formula or use an NG tube.

You could also do supplemental EN - usually some mix formula and food (for example, 50% formula, 50% food), to help with weight gain and growth. Most parents will start with OTC drinks like Ensure and Boost, but some GIs prefer using semi-elemental (more broken down) shakes, like Peptamen Jr or Pediasure Peptide. Some kids are able to tolerate formulas like Boost and Ensure and others aren't.

I'll tag some other parents so you can hear from them:
pdx
Clash
Tesscorm
Farmwife
Mehita
crohnsinct

Good luck!
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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
03-21-2017, 02:35 PM   #5
ria.chada
 
Join Date: Mar 2017
Location: Pittsburgh, Pennsylvania
Thank you @ronroush7 and @Maya142 for your advice
03-21-2017, 02:45 PM   #6
ronroush7
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Welcome

03-21-2017, 04:14 PM   #7
my little penguin
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Typically when you fail remicade
They now switch from anti tnf to other options
Such as Stelera
Since your child would be considered a primary non responder


Going to tag Clash
And vtfamily
Both have kids on Stelera
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DS - -Crohn's -Stelara -mtx-IVIG
11-28-2017, 12:13 AM   #8
vtfamily
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Did you go with the Setelara? How is it working for you?

Remicade and Humira did not work well for my son. At 12 years old we went to Stelara. He has been on it for almost six years now, and doing GREAT! He was one of the few early kids to use it and, so far, it is the only thing that has really worked for him.

Best wishes to you.
Cheryl VT
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