Community Forum

Hello!

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.

Reply posted for Alison Q Turner.

Hello! My daughter was diagnosed with Crohn's about six weeks ago. The medications they have her on aren't working as planned and they want to treat with Remacaid as well!! I'm wondering did you all chose that option an if so do you have any suggestions or care to share your experience with us. I'm still learning and very new to this. An it can be a little overwhelming at times especially when we just want to keep our babies as healthy as possible.

Reply posted for faucherh.

Hello, I too am a parent of a newly diagnosed child. My daughter who is 9 yrs old as well. Please let me know if you find support groups because I'm looking as well. I've got questions my daughters doctor wants to put her on Remicaid. I'm not liking this IV thing at all!!! In fact we have been going to Doc to doc.
I know how you feel they are our life. We want them better period but we aren't doctors and a lot of this is overwhelming and sleepless nights!
Im here for you and can answer questions or just support!
Take Care!!

Reply posted for RImomof3.

I would use free range whole chickens and make homemade bone broth for starters and get grass fed milk from 100% grazed fast growing grass cows that are considered A2-A2 cows with no graining.  Dutch Meadows Farms is where I get mine.  It’s raw and organic with live bacteria.  It healed me.  

Reply posted for JWSmith14.

I presently take no medications and have been off of them for over 3 months and went from 137 lbs to 167 lbs in two months and maintain my weight around 164 lbs.  Raw milk from cows grazed on fast growing grass all organic and not pasteurized.  You want it from cows that are considered A2-A2 cows that don’t have a specific protein that most cows now have that has Gltuttinin in it.  Cage free whole chicken boil it and use basil, tumeric, and pink hymalyan salt.  Do just the broth for the first few days and then start drinking milk as much as you’d like and after a couple weeks I would cut carrots and celery and boil it in the broth.  I’ve healed myself with these couple items and have cheat days as well.  The body needs new live bacteria and the raw milk and Keifer very key as well has it. 

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.

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.  

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. 

Reply posted for MDP3.

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

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

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: https://www.crohnscolitisfoundation.org/chapters .    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 powerof2@crohnscolitisfoundation.org or call 888-694-8872 x 8 to learn more.
Power of Two Video: https://www.crohnscolitisfoundation.org/power-two
Videos and Kids & Teen Website
 
http://www.justlikemeibd.org/
https://www.crohnscolitisfoundation.org/youth-parent-resources
 
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. 
 

• Videos:  Mental and Emotional Well-being  https://www.crohnscolitisfoundation.org/mental-health
• Brochure:  Emotional Factors https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/emotional.pdf
• Camp Oasis https://www.crohnscolitisfoundation.org/get-involved/camp-oasis

Reply posted for faucherh.

Hi, 

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