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Crohn's Disease Forum » Your Story » Pediatric Crohn's???


07-14-2011, 05:29 PM   #1
Jenica
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Pediatric Crohn's???

Hi!
My daughter was one year old when she first presented with blood in her stool. She had a colonoscopy/endoscopy done and it revealed colitis throughout her g.i. tract. She was diagnosed with general colitis, then decidedly dairy/soy allery, then changed to eosinophilic esophagitis.
One year later she was rescoped with a different G.I. doc. He diagnosed her with Crohn's disease. Her colon looked terrible. She was put on steroids and then on Sulfasalazine as a maintenance drug.
One year post Crohn's diagnosis, and her rescopes showed absolutely no evidence of disease. The doctor can't explain this. We are left wondering, what is going on?? Is this Crohn's? ANY ideas????
My son was also diagnosed with leukemia, and I can't help but wonder... does anyone else have any history of Crohn's (or Chrohn's like disease) and Leukemia?
Thanks!
Jenica
07-14-2011, 07:46 PM   #2
Dexky
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Well, I hope she doesn't have crohns but she could have just responded very well to her treatment. Is she still on meds? I've never seen leukemia mentioned in a chron's discussion. I'm sure it isn't unheard of. How is your son doing? Good luck and welcome Jen!!
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07-14-2011, 11:30 PM   #3
Jenica
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Hey, thanks for the reply!
It's funny, I have met so many families who have kids with cancer, but it never even occured to me that I could seek out families affected by a Crohn's diagnosis.
How old was your child when he/she was diagnosed? You are the first parent of a child with Crohn's that I have even heard of. We were told that this diagnosis is pretty uncommon for a one year old.
But then we are very familiar with the uncommon. Our son was diagnosed with a less common and aggressive form of cancer. He is doing pretty well though right now.
How is your kid (sorry I forgot his/her name) doing? Did your G.I. doc recommend any special diet? Our doc said diet isn't an issue.
07-15-2011, 04:46 AM   #4
Dexky
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My son was 10 when dxed, he'll be 12 in Sept.. He is doing very well on Humira. We were simply told to provide a healthy, well-balanced diet. At first, there were foods that bothered EJ but after treatments took hold, he's could eat anything I think. We don't let him have fast, greasy food but I don't think it'd bother him.

There are a few on here with children dxed very young like your daughter. I personally cannot imagine how hard that would be. I'm so sorry to hear about your son. You've really been hit hard Jen.
07-15-2011, 09:20 AM   #5
xJillx
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Hi Jenica and welcome! I am so sorry to hear about your children. However, it is great news your son is doing well and daughter's recent scope was clear. Were biopsies taken? Were they normal? From what my doctor has explained to me, even if you are on treatment and responding well, biopsies will still show positive for Crohn's if you do in fact have Crohn's. However, to be honest, there are a few members on the forum that do have a Crohn's diagnosis without positive biopsies. But if biopsies are normal, that is a good sign. Was your daughter ever tested to see if she had an infection?
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07-15-2011, 10:56 AM   #6
Jenica
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Hi Jill!
Thank you so much for responding!! They biopsied all three times they scoped Taylor. The first time it showed a lot of eosinophils. The second time it showed granulomas. The third time the biopsies did not pick anything up.
They never tested Taylor (my daughter) for infection. Do you know specifically what kinds of infections they can test for?
She was seen by an immunologist to rule out an autoimmune disease. She seemed normal to them.
Recently Taylor has had a low red blood cell count. Her doc thinks it is likely a side effect of her Sulfasalazine medication.
What has your journey been like? I can't believe this forum! I am SO happy to have found it! As our son has been fighting for his life, our daughter's Crohn's hasn't been the focus of our attention, as truly awful as that sounds.
07-15-2011, 11:01 AM   #7
Jenica
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Mark,
I am glad to hear that EJ is doing well!!
07-15-2011, 02:54 PM   #8
xJillx
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I am not exactly sure what infections specifically they should test for, but a viral infection of the GI tract (Gastroenteritis) cause inflammation and similar symptoms of Crohn's. But if it was an infection that has cleared up, tests won't be beneficial now. But I sure hope this was the case.

My journey has been a whirlwind. I never had any GI issues in my life until last spring. I started passing a lot of mucus, but no other issues. I went to a GI and she recommended a colonoscopy off the bat just to be sure all serious things could be ruled out. However, it turned out to be serious - I got an immediate diagnosis of Crohn's. Since then more symptoms developed and I have been playing with treatment options to try to feel better. I have been having more good days than bad lately. I am not 100% yet, but I am better than I was a few months ago.
05-07-2017, 02:23 PM   #9
Momofaka
 
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My child is having colonoscopy tomorrow. He is having trouble finishing the prep. He has finished all but the last 1/4. Any suggestions?
05-07-2017, 04:08 PM   #10
ronroush7
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My child is having colonoscopy tomorrow. He is having trouble finishing the prep. He has finished all but the last 1/4. Any suggestions?
There is a section in here called Parents of Kids with Crohns. I am going to tag Clash, Maya 142 and my little penguin.
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05-07-2017, 04:25 PM   #11
Maya142
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I answered on your other thread. Hang in there!!!
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Mom of M (20)
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Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
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