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Crohn's Disease Forum » Your Story » Brand New Know Only What Google Has Taught Me... sigh..


03-01-2017, 08:43 PM   #1
aburns0213
 
Join Date: Mar 2017
Location: FAyetteville, North Carolina
Brand New Know Only What Google Has Taught Me... sigh..

My newly turned 11 year old daughter has Crohn's. Well that's what they told me. It has taken them since Nov, to determine this. Since then she has had diarrhea 5 times a day and it wakes her 2-3 times each night. For 3.5 months! She's skinny as a tooth pick from weight loss, has no energy, runs low fevers, doesn't want to eat or drink due to the pain from swallowing.. she has the ulcers on her esophagus as well. After all the testing, xrays, CT Scans, Colonoscopy, Enoscopy, etc etc. 1st doctor was so brief with me said it was Crohn's he wanted to get her on Remicade ASAP, spoke very quickly then went on his way. I was dumbfounded. Taught myself about Crohn's from Google, taught myself about Remicade, from Google.. After realizing I couldn't handle dealing with a doctor long term, who didn't spend more time with me, I requested to be moved. My daughter will be seen at a Children's Hospital this Friday. In the meantime they did put her on Prednisone a week or so ago. It worked right away.. for a few days.. And now she has diarrhea again. Is that normal? To work and give my daughter utter relief and intense hunger.. and then to just stop? Anyway, our new doctor has looked over all her records and let us know they will be discussing Azathioprine with us Friday. Is there a reason 1 doctor was going to do Remicade and the other wants to try Azathioprine? So me and Google were friends yet again learning about Aza. Is it true it may take months for it to start working? My poor child looks anorexic, pale, ugh I hate this for her. Should I be leaning one way or the other on the 2 recommended treatments from 2 different doctors? Thanks for anything you have to offer. I'm kinda tired of Google...

P.S. I got a letter from 1st doctor saying her SIBO test came back abnormal and to go on that special diet for it.. really they can't call me?!?! I'm taking the letter with me to doctor 2 this Friday smh..
03-01-2017, 09:36 PM   #2
ronroush7
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Welcome. I am sorry for all your child and you have gone through. I am also sorry for how the first doctor treated you. We also have a section in here called Parents of Kids with IBD. I am going to tag Clash, Maya 142, my little penguin
03-01-2017, 09:44 PM   #3
aburns0213
 
Join Date: Mar 2017
Location: FAyetteville, North Carolina
Thanks I found it!
03-01-2017, 09:54 PM   #4
Maya142
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I posted on your other thread - on the Parents' forum.
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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
03-02-2017, 05:28 AM   #5
my little penguin
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Posted on your other thread in parents group
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