Sorry you've had to find us here! I used to live in Kansas City (and before
that Columbia)-- unfortunately, my son wasn't diagnosed properly until we moved
to the east coast-- but in case you're not aware, one of the biggest cvs
specialists is located in columbia... if you are interested, i'm sure someone on
this list can give you his ocntact info... (would be worth driving 2 hours to
see him).... i'm also wondering if he might be a good contact for finding a
support group for your daughter... you might also check on the cvsa web site
where she could at least join on line discussions via a message board.... I too
worry about college/work-life (but since my son's 5 i keep hoping things will
improve by then).....Good luck! Mimi


-------------- Original message ----------------------
From: "mcdolemom728" <mcdolemom@...>
> Hi, I'm new to this Yahoo group, but not to CVS. I have a 16 year old
> daughter that has had it most of her life. I'm wondering if there is
> anyone in this group that lives in the St. Louis, MO area? I'd like
> to know if there is a support group in this area. My daughter would
> really benefit from meeting other people, especially teenagers, with
> CVS. We do not know anyone else with CVS and I know that she feels
> really alone in this. I'd also like to hear from other parents of
> teenagers and college age kids with CVS. We have some concerns about
> her future with college. We are also considering applying for SSI for
> her and would appreciate any advice that could be offered. We are
> really concerned about her losing her medical benefits when she turns
> 18. I am glad this group exists and look forward to hearing from
> you. God bless.
>
>
>




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