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looking for friend with Crohns for 11 yr. old boy


Sat, April 24, 2010 5:40 PM

Since the CCFA does not have support groups for children, I'm looking for some friends for my eleven year old son that have Crohns & could relate to what he goes through.  We live on Long Island on the south shore of Nassau County.  If anyone has a child in that area that would be interested in a friend that also has Crohns, please let me know.  If anyone out of this area is interested, maybe the kids could write or e-mail back & forth.  I think this would be a big help for my son to talk with other kids like him.

FPO crohnsmomof2
Joined Mar 7, 2010

Thu, April 29, 2010 8:19 PM

 Reply posted for crohnsmomof2.

Hi... my 11 year old was diagnosed with Crohn's a year ago.  He is going to Camp Oasis this summer.  His pediatric GI volunteers there as one of the medical staff and really encouraged us to look into it.  He said the kids make friends that, even though they live in different areas, they often stay in touch with each other through out the year.  Camp Oasis is a week long summer camp experience for children with IBD.  It is held in many different areas around the country.  We went to an open house a couple of weekends ago and it looks like such a great opportunity for the kids!  We actually met another 11 year old there who lives a few hours away who will be coming to camp.  Click on "Kids and Teens" to the right and then "Camp Oasis".  All the info is there.


Another option might be to contact your closest children's hospital and see if they have any support groups for children with chronic illnesses... not as good as having a group with IBD only, but might be something.  Our local CCFA doesn't run support groups just for kids either, but they seem to do a lot of family activities.  We haven't been able to go to any yet :) but hope to.  Is there a Take Steps Walk for Crohn's and Colitis Walk near you that you could attend?  Maybe you could find some other kids in your area there?

My son isn't very good about emailing :)  Or at checking the facebook page we set up for him and his cousins to keep in touch. :)  But we could try to introduce them!  

Good luck... I know it is so hard to watch our children struggle with this disease!

FPO mominmichigan
Joined Jul 24, 2009

Mon, April 26, 2010 12:00 AM

 Reply posted for crohnsmomof2.

Have you looked into Camp Oasis?    My daughter went for the first time last summer and had a blast.   She already has a spot reservered for this year.   It would be a good opportunity for him to meet other kids, they all have either UC or CD (it's a requirement).  

Another thing you may want to check out is the "Kids & Teens " tab on this site, he may be able to chat with other kids there too.

 

FPO lizzies mom
Joined Sep 9, 2009

Sun, April 25, 2010 3:14 PM

 Reply posted for Lizzies Mom.

I've checked with our local CCFA; they informed me they no longer have kids support groups because they found they didn't really work.  When the kids were feeling good, they wouldn't come & when the kids were feeling bad & could use the support group they would come & there wouldn't be other kids there for them to talk with that could encourage them.  It sort of defeated the purpose.  This is why I'm just trying to hook up with people on my own.  My ped GI doctor referred me to the CCFA, so no help there.

FPO crohnsmomof2
Joined Mar 7, 2010

Sun, April 25, 2010 1:57 PM

 Reply posted for crohnsmomof2.

Check with your pedi gi.   If they don't currently offer a support group, they may be willing to start one.  Our docs office started one and it was great.  The kids met in one conference room, visiting with the social worker and visiting with each other and we parents were in the next room sharing ideas, thoughts, experiences, etc.   Unfortunately, my daughter was the youngest and the CD "veteran" of the group.  We stopped going because the age difference and the other kids "tween" attitude was impacting my daughter negatively (she was only 7/8 at the time).  

If the pedi gi isn't willing to start a group, your local hospital or CCFA office may be willing to start one.   There are probably lots of other families that could benefit from it.

Lizzies Mom

FPO lizzies mom
Joined Sep 9, 2009

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