Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How To Start A Support Group For Kids ?


maximoo

Recommended Posts

maximoo Enthusiast

Hello All: I was wondering how does one start a support group for kids? I've never been to a support group of any kind and am unsure how to set one up, what topics/themes to include, how long & how often meetings should be. Where should meetings be? Is a newsletter a good idea? I don't make a lot of money so I couldn't put much out. Should a fee be charged to cover materials? Would I need a grant? I do know I'd like to have activities for the kids--perhaps a simple cooking lessons, & different topics like how to handle the pressure @ birthday parties etc, easy biology lessons about celiac & its effects, word games (learning ingredient words that mean gluten), role playing. etc. Maybe I could get a guest speaker from time to time like a nurse or dr Should there be a fun field trip too?

I have no idea if this is even feasible. I do know that necessity is the mother of invention & since I haven't seen a support group for kids I'd like to know what it would take to make it possible & successful. Any & all ideas would be appreciated.

  • 1 month later...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Cara in Boston Enthusiast

We joined the group organized by Children's Hospital in Boston. We've only been gluten-free for about 3 months so we haven't really become active but here are some examples of what ours does (maybe someone with more experience can expand on them):

Each kid gets a "care package" in the mail welcoming them into the group. Ours was filled with all kinds of treats (donated from vendors I imagine?) and sample foods, along with lots of baking mixes and general information.

They have regular meetings (I think).

They have three annual special events (summer BBQ, Holiday party, etc.) where you can meet everyone and all the food is safe - we are REALLY looking forward to that!

There is a handy newsleter - maybe it comes every other month?

We paid a fee to join. Can't remember what it was, but not a lot. Worth every penny.

I think they also have an email list, but I'm not sure . . .

Good luck -

Cara

  • 3 months later...
Boatswife Newbie

I am also looking into starting a support group since there's none around (not even within a 4 hour drive!). I love the ideas mentioned above.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,037
    • Most Online (within 30 mins)
      7,748

    cbattiato
    Newest Member
    cbattiato
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
    • Beverage
      Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?
    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.