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Crohn's Disease Forum » Parents of Kids with IBD » New member, just wanted to say hello!


 
04-01-2013, 09:27 PM   #31
AZMOM
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Join Date: Nov 2010

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Pisces' Mom - I just noticed you're a Kentuckian too. :-) Howdy neighbor!

J.
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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
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-02-2013, 12:32 AM   #32
vtfamily
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Location: Palmdale, California

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I wanted to offer a glimmer of hope for the normal kid, normal activities, normal life segment...

We too have been battling Crohn's since the preschool years (with very similar symptoms of constipation, food avoidance, pain, etc...). My son has had his share of flares, strictures and medical procedures. He is 13 yrs old now and in the middle of a really nasty flare (he missed the entire 3rd quarter of school and is scheduled for surgery in two weeks).

Still, he had an AWESOME spring break! He was able to ski for four days...in a row! He had a great time. Normal kid, enjoying normal activities!

He is currently on TPN (IV nutrition) and prednisone. He also just started Stelara (2 doses so far). Since he is getting all of his nutrition via the TPN, we allow him to eat what he wants (which isn't much).

My son has a very healthy attitude about his Crohn's. He thinks that everyone has something that they are good at and something that they have trouble with. His difficulty just happens to be the Crohn's. When he flares, we address the problem and move on. We just try to keep everything as normal as possible in between and, as a result, my son only sees a world of possibilities in front of him!!

Best wishes to you and your daughter.
Cheryl
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Crohn's Disease Forum » Parents of Kids with IBD » New member, just wanted to say hello!
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