Paulette and others- Looking for a forum for parents of kids with Crohn's

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mamande3
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/23/2009 1:56 PM (GMT -7)   
Hi Paulette and everyone,
 
I have also tried to join Dragonpack with no success.  Does anyone know how we can start our own chat group?  My 13 y.o. son was recently diagnosed with Crohn's (my dad and sis have it too) and I would really like to be able to talk to other parents dealing with similar issues.  I'm open to any suggestions.
 
Thanks!
 
Heather

MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 3/23/2009 3:40 PM (GMT -7)   
Great idea, Heather. Please let me know if you come up with anything. If I were more tech savvy, I would start something up myself!!!
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol 


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 3/23/2009 4:15 PM (GMT -7)   
I've been a member of the Dragonpack Parents Board for years and I am not quite sure there is another Parents Board on the net that I have come across yet.

I do know that it might take awhile when you register for the Dragonpack Board for Misfit to send you a confirmation email which will activate your membership.

Wait a bit and then try registering again if you don't get a confirmation email within a couple of days or so.

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 3/23/2009 4:26 PM (GMT -7)   
Have you tried e-mailing the actual forum people? The help e-mail? I would try that. That would be an amazing idea.

This is a random thought, BUT have you ever heard about the CCFA Camp Oasis for kids? It is amazing and I would definitely look into. Not sure where you live though. Also, you can try and contact the CCFA.org regarding a forum like this.

Good Luck!

LOVEPINK
I have had Crohn's since I was 21 years old and I am now 28!!
Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 3/23/2009 4:35 PM (GMT -7)   
Emailing Misfit of the Dragonpack Board would actually be a very good idea. She maintains a wonderful site, but I do know that she does not activate memberships on a daily basis.

Email addy is: ibdsupport@dragonpack.com

Gwen, Heather and Paulette, I hope to see you soon on Parents Board.

Post Edited (MaryS) : 3/23/2009 5:39:12 PM (GMT-6)


mamande3
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/23/2009 5:20 PM (GMT -7)   
Thanks for the repiies.  As you suggested, I sent an e-mail directly to the administrator.  I hope to be accepted soon, as it looks like a great site!
 
Heather

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 3/23/2009 5:22 PM (GMT -7)   
Fabulous! I am so glad. Please keep us posted!
LOVEPINK
I have had Crohn's since I was 21 years old and I am now 28!!
Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!


mamande3
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/26/2009 6:50 PM (GMT -7)   
Still no response to any of my e-mails.  Too bad.  I would really like to join that site.
 
Heather
13 y.o. ds diagnosed with Crohn's this year.
My father and sister have it too.
 
DS is currently on Pentasa, Perinethol and Euro-Fer. Hoping to see some improvement soon...


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 3/26/2009 7:09 PM (GMT -7)   
What a shame- that is really to bad. I sure wish I had more ideas of what else you could do.  Someone must though. Maybe restart a posting.  I would think one of the admins or moderators would get right back to you.  I know there are serveral groups out there- there has to be.  Have you tired live support groups in your city?
LOVEPINK
I have had Crohn's since I was 21 years old and I am now 28!!
Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 3/27/2009 11:58 AM (GMT -7)   
Heather,

So sorry you having such a tough time joining the Parent's Board. Can't fathom what is up with that. There is only one administrator who happens to also wear the hat of moderator!!

I will do a post on the Board to try and get Misfit's attention. Every so often she does a post on the steps you must take to register for the Board. I think it is time for her to do it again.

Hang in there!

mamande3
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/27/2009 12:34 PM (GMT -7)   
Thanks, if any of you are members and can post something to ask her to please check her applications box, I would be so grateful!
 
Have a healthy and UNEVENTFUL weekend, everyone!
 
Heather
13 y.o. ds diagnosed with Crohn's this year.
My father and sister have it too.
 
DS is currently on Pentasa, Perinethol and Euro-Fer. Hoping to see some improvement soon...


keenca
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 3/28/2009 10:34 PM (GMT -7)   
I tried to join twice in the past month to no avail. I also wrote an email last month but have not gotten a response. I will try again today.

Thanks for any help that you can offer!

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 3/29/2009 7:42 AM (GMT -7)   
I did post a shout out to Misfit on the Parent's Board to try and get her attention. There is a new Parent on the Parent's board who just started posting within the past day or so. Not sure how long it took for her registration to get confirmed though.

I know the registration process is quite different than back in the old days when I joined the Parent's Board. It is not an immediate registering process like it used to be. You do have to wait for a confirmation email from Misfit to activate the registration. She might be behind in this process for some unknown reason.
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