Child peer support group for crohn's

[Tea]

Is anyone else having trouble finding a peer support group for your child?
CCFA chapter near us has camp Oasis (we just missed it but hope to attend summer 2013). Other than that they have a "youth group" but the coordinator schedules maybe one event a year. July 2012 was a movie in the park. This year nothing scheduled thus far and we are on the list to be notified IF something is scheduled. We know adults with Crohn's but not any other children and I really think my son could use some peer support to know he isn't alone in that age group. Does anyone know of any group?

:runaway:

 

[Clash]

We had the same situation...there just wasn't a group in our area for children per say although one or two for adults. Check with the larger hospitals in your area, sometimes they may have some insight. C gets his remicade infusions at a pedi GI lab so for the 2+ hours he is getting the infusion 6 other kids are also getting theirs. It is a drive for us but C really enjoys the time he spends with other kids that are going through the same thing he is. He said he just feels way more comfortable discussing CD among fellow IBD'ers. So we didn't transfer him to the infusion lab at our local hospital after the loading doses since it was a catch all lab and he wouldn't have that same peer support. Good luck I hope you are able to find something!! Does he go to a large school/chuch? I know a friend that found out when her son was diagnosed that there were 5 other kids at her son's school with CD/UC and she started a monthly group.

 

[Tea]

Unfortunately we never run into other ibd kids at the clinic or hospital. He's not on infusions yet. I keep hinting to our GI nurse that she needs to start a peer group. Adult support group I attended won't let kids attend. I asked school if there are other ibd kids and they say he's the only one. I'll keep searching.

 

[Tesscorm]

I've seen notices in our neighbourhood of people wanting to start 'walking clubs', etc.... perhaps you can try posting some notices 'advertising' the start-up of a children's IBD club??? If they allow you, I'd suggest posting at the drugstore, doctor's office, church, community centre, etc. To maintain confidentiality, you could easily set up a new email address for the 'club'.

 

[my little penguin]

WE emailed CCFA and they found a few parents in our area who had LO with IBD - not a group but at least some kids.

 

[izzi'smom]

I was going to ask if you participate in your ccfa take steps walk. We met our first friend because of a wonderful nurse the last time Izz was an inpt (she passed along our # to another IBD patient)...we met up at the walk and =have picked up a few more IBDers since.

 

[Patricia56]

CCFA has an online forum for kids. Perhaps that is an option for direct support?

 

[Farmwife]

You might have been given this advice but could you ask your GI clinic if they know of one?

 

[DustyKat]

Did you join the Illinois Local Support Group when you joined Crohn's Forum? I don't see your name listed...

http://www.crohnsforum.com/showthread.php?t=30700

...you won't be able to access via the link given unless you have.

I see there are a couple of parents listed there. I would post your question in that area. Perhaps someone there will know of something even if they don't have kids with IBD.

Dusty. xxx

 

[my little penguin]

Dustykat -
Where is the list of local support groups? To search
I may have missed it.

 

[DustyKat]

@my little penguin:

Go to settings on the blue tool bar under the Crohn's Forum logo. Click on it.

Scroll down the menu on the left hand side of the page to third heading - Settings and Options.

The fourth sub heading is Edit options. Click on that.

On the page that appears scroll to the last text box titled - Miscellaneous Options.

The last text box within that larger box is Local Support Group Options. When you list your location you will automatically be granted access to the corresponding local support group.

I recall some members did have issues at one point with the Miscellaneous Options box being absent (as opposed to collapsed). If this is the case contact David and he can restore it for you.

Dusty.