How did you tell your child they had Crohn's?
Wed, May 18, 2011 6:45 PM
Just found out my 3-year-old may have Crohn's, after a 4-month battle with C. diff cycling back and forth with chronic constipation/blockages and 22 years of watching my brother deal with the disease (hence the name DoubleTrouble - having two close family members with the disease and having two GI-related issues going on in close succession)...
I actually haven't told my daughter anything at this point - she knows she's been sick and she's pretty obedient with her diet, taking meds, etc. Don't know what it would do other than upset her at this point, and she is really young to try to understand.
So here's my question - how did you tell your child about their disease? Did your doctor explain it? Did you tell them? How did you do it?
Part of me thinks we should just answer questions truthfully as they arise, rather than making some big pronouncement now that she's been diagnosed. That seems to have worked so far.
We're trying to be mindful not to talk about it when she's around, but we're sharing the likely diagnosis with friends and family, and fear having her introduction to it will be by overhearing and having her say, "I have Crohn's? What's that?" She is a sharp cookie for a preschooler, and she picks up on a lot.
Thanks for any help and experiences you can offer!
doubletroubleJoined May 18, 2011
Sun, June 05, 2011 10:13 AM
Reply posted for DoubleTrouble.
ccfa has an IBD and me activity book for kids. It's a comic book. There's a link for it. Click on resource center on top and click on kids and teens.
Joined Nov 9, 2008
Sun, June 05, 2011 5:08 AM
Reply posted for DoubleTrouble.
My son was diagnosed w/UC when he was 8 yrs old. We told him w/his dr to explain...but when we go to appointments he always has his ipod and tunes out when it gets to hard for him to listen to the technical information...and that' okay...they are kids and we explain to hime we are the ones to carry the burden of worry...not him...we like to give him the opportunity to not have too much to worry and just be a "kid". Hope this helps...
Joined Feb 17, 2010
Sun, June 05, 2011 12:00 AM
Reply posted for DoubleTrouble.
Part of me is sad that your daughter has been diagnosed so young and part of me feels it might be a good thing being diagnosed so young. She is young enough to not really know any different. My daughter was diagnosed at 10 and she is now 13...she gets very angry that for 10 years her life was "normal" and now she struggles and is so different from her friends. Above all, be honest about everything. I feel like if you are not "matter of fact" about things, she is going to sense there is shame and I think that would make her feel worse. Of course she isn't going to understand what Crohn's is...you can just say things like her tummy doesn't work the same way as other people. Best wishes to you
Joined Dec 5, 2010
Sun, May 22, 2011 9:58 AM
Reply posted for Lizzies Mom.
Lizzie's Mom,
Thanks for your encouragement and the wisdom that comes from having "been there." I truly hope your daughter is thriving!
doubletroubleJoined May 18, 2011
Thu, May 19, 2011 8:06 AM
Reply posted for DoubleTrouble.
Let's face it, three is young. My daughter was 4 when she was finally diagnosed, and it wasn't easy (so I know what you are going through). I didn't make a big elaborate announcement. What I did do was all the research I could get my hands on and educated myself first.
My daughter was put on meds (3x/day) and like yours sharp as a tack! So, ofcourse, here come the questions. I did exactly what you said, answer the questions as honestly and as age appropriately as possible. I used the terms that you have a "special belly" and it needs this to feel its best. As the years have gone by (she is now 11) she has become more knowledgeable and confident.
Lizzies Mom
Joined Sep 9, 2009
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