Our Chiari Kids / Support for parents

August 28, 2000

Hey there everybody,

I remember when my daughter was first diagnosed with Chiari/Syringomyelia in

'96, there was very little information or support available to me as the

parent of a " Chiari Kid " . Even the doctor had very little in the way of

hand-outs, pamphlets to give me. I felt totally lost. Now I've noticed on

this list there are many parents of newly diagnosed children who are totally

in the dark about the conditions of ACM/SM because some doctors still offer

very little (apparently) in the way of information. And most support groups

are mainly for the adult population stricken with these disorders.

I have started a support group at MSN Communities just for this reason.

Anyone who's new to Chiari/SM and related disorders looking for support or

info for their child(ren), I encourage you to join. I also need the help of

folks who's child(ren) are already past the newly diagnosed stage (veterans

to these disorders), as your input and insight into life with this

situation(s) will be a great help to those who's journey is just beginning.

Remember how you felt after your child was diagnosed! These folks need our

help!

On the site, there are links, message boards, a photo album, chat, etc. Many

tools that will be of great use to parents seeking to find or give out

information. Please join if you can. It is brand new. I'm the only member at

this point. I hope I won't be the only one there for long but if so, I'll do

my best to answer anyone's questions that may need my help. A support group

with one soul, whoever heard of such a thing. <LOL> Sometimes, I am my own

support group though.

Anyway, click on the link to get started. You'll have to do the " sign up "

thing at MSN and then you'll go from there. E-mail me privately if you need

any help with it or have questions. Thanks ahead of time!

communities.msn.com/OurChiariKids/</A>

communities.msn.com/OurChiariKids/

Frances in NC

ACM1 - no surgery

Mom of twins Lynzi & Lesli -8yrs old

Lynzi- ACM1 12mm/SM two syrinx (decompression surgery 11/96)

craniotomy, laminectomy c1-c3, durapatch

Lesli- Tethered Cord (no surgery)

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