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Parent of a child diagnosed with Crohns

Mon, August 19, 2019 9:07 AM


Just looking for community memebers that are parents of children diagnosed with Crohns. My son is 9 years old and recently had a colonoscopy/endoscopy and labs with significantly high inflammatory markers that's suggestive of moderat crohns disease. We are still waiting for the biopsy results to come back. 

I didn't see any kid specific groups.  If anyone knows of one please let me know. I am still learining about all this stuff.

FPO faucherh
Joined Aug 19, 2019

Wed, December 11, 2019 9:03 AM

Reply posted for faucherh.

Hi! My 9 year old son was diagnosed with Crohn's in September. He has severe fistulizing disease and started humira 8 weeks ago. Inflammatory markers are back to normal but he has daily pain and vomiting. This continues regardless of what he eats. It is heartbreaking to be unable to help him or know what diet to follow.

FPO JWSmith14
Joined Dec 11, 2019

Sun, December 08, 2019 11:28 PM

Reply posted for faucherh.

Hi. I'm a parent of a 13 yo that got diagnosed this summer as well. With Crohn's. It's still pretty rough. In a flare now. All the info is pretty overwhelming. Sigh. Just want my baby to feel better.  

FPO Sharug
Joined Dec 8, 2019

Wed, October 23, 2019 11:19 PM

Reply posted for MDP3.

My 4 year old son was recently diagnosed with UC and in the past 6 weeks he hasn't responded to any treatment. I'm curious to hear from other parents how kids this young are responding. We will most likely start a biologic next week like Remicade. 

FPO RImomof3
Joined Oct 15, 2019

Thu, October 17, 2019 8:55 AM

Reply posted for MDP3.

Hi. My 3 year old has also recently been diagnosed. Did you find any groups? 

FPO Leanna420
Joined Oct 17, 2019

Wed, October 09, 2019 8:30 PM

Reply posted for faucherh.

Hi, my son was just dx beginning of Sept with crohns, he's 12. I don't know much either and i would really like to get me son talking to other kids too

FPO Mminster
Joined Oct 9, 2019

Wed, September 11, 2019 11:16 AM

Reply posted for faucherh.

Support Groups
The Foundation has support groups for parents and caregivers.   To find out if there is a group in your area check out your local chapter at: .    If there is not a parent or caregiver group in your area consider our Power of 2 program.
Power of Two Program
Interested in peer-to-peer support? Not finding a support group in your area? Power of Two is a peer-to-peer support program for individuals seeking to talk by phone to other patients or caregivers with IBD.   With this program, you can be connected with other parents.  If you are interested in signing up for the Power of Two program, please e-mail or call 888-694-8872 x 8 to learn more.
Power of Two Video:
Videos and Kids & Teen Website
Support Resources
When you or someone you know has been diagnosed with Crohn’s Disease it is common to have many questions. We are here to help answer those questions and to provide you with the necessary support and resources. 


FPO administrator
Joined Oct 12, 2017

Fri, September 06, 2019 12:33 AM

Reply posted for faucherh.


my 3 year old daughter has Ulcerative colitis, can't find any groups myself...

Joined Sep 4, 2019

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