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Crohn's Disease Forum » Your Story » My daughter Alexxius Rendon


07-17-2014, 03:39 PM   #1
TAMMIHEFFNER
 
Join Date: Jul 2014
Location: MANSFIELD, Ohio
My daughter Alexxius Rendon

My daughter Alexxius is 15 years old. We just found out she has Crohn's disease about 2 months ago. They thought she had pancreatitus. The medicine for that didn't work. She couldn't go to the bathroom. We ended up in Great hospital. They sent us to St.jude hospital in Vanderbuilt for some test. Not only did she have Crohn's, she also had ovarian cyst.
07-17-2014, 03:43 PM   #2
Johnnysmom
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Location: Cincinnati, Ohio

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Hello Tammi and welcome to the forum. My son was diagnosed at 11 and is now 14 years old. It was quite a shock and very scary and sad for us at first. Is your daughter doing better now? Is she on medication? I can only say for us it took a long time for my son to feel normal again, the healing is slow, but hang in there. We are all here for support. My son feels completely normal now and you would never know he has crohn's.

We are at Cincinnati Children's hospital. I can't recommend it enough. Is Mansfield anywhere near Cincinnati?
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Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
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07-17-2014, 04:07 PM   #3
TAMMIHEFFNER
 
Join Date: Jul 2014
Location: MANSFIELD, Ohio
She is on 9 different meds. right now. She has ovarian cyst. and 2 cyst on her right and left lung. We are fighting a big battle right now. She goes to Nationwide Childrens Hospital in Columbus Ohio. We have a great team of doctors. And St. Jude has played apart in the healing also. They made it possible for her to go spend the summer with her dad.
Dx May 20th 2014
polyethylene glycol 17 gm
prednisone done july4th 2014 to strong for her stomach
erythromycin -benzoyl gel for her face because the meds. are strong they make her break out.
proair hfa as needed for her breathing.2 puffs per day as needed
omeprazole 20 mgs 1x daily
doc-q-lace 100 mgs 1x daily
motrin 600mgs as needed
flovent 44 mgs twice daily steroid
montelukast 1x before bed

Those are the ones I can think of. She still sometimes sleeps all day because she is not feeling good. We will find a cure for Crohn's. They told her she could not have babies. The doctors told me and her , that she is in the fight of her life. But we will win.
07-17-2014, 04:15 PM   #4
DJW
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Location: Ontario

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Hi and welcome. I'm sorry to hear about your daughter.
Sending you both my support.
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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
07-17-2014, 07:16 PM   #5
my little penguin
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Hugs
There is a parents group here
http://www.crohnsforum.com/forumdisplay.php?f=49

By the list of meds she doesn't seem to be on any long term crohn's meds ...
Ie immunosuppressants ( 6-mp/Imuran ) or biologics ( remicade )

Where is her disease located ?
What imaging had done ?
Motrin is not recommended at all for crohn's patients since it is a NSAID and can cause bleeding in the gut and a crohn's flare .
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