My daughter has Spina bifida Occulta.... There seems to be so much
debating going on about whether
TCS (tethered cord syndrome) or LMC (lipomyelomeningocele)
are an actual form of SB. All I know is that when my daughter was a
week old I was told she had Spina Bifida Occulta. My daughter has
had surgery to detether her spinal cord at 3 months of age. She has
nuerogenic bladder and bowel, we cath every 4 hours and we do a
regimine of fiber and suppositories to train her bowels. She has leg
length discrepancies and wears an AFO on her left leg. Her left calf
lacks muscle tone. She also has a large hemangioma on her left hip
and buttock and has a skin tag and the dimples on her buttocks. I
don,t know if she is eligible for CAP-C services as I really don't
know what they are. I am not sure what kind of support groups there
are in my area, but we did go the Guilford County Exceptional
Childrens office today and fill out forms to have my daughter
evaluated for an IEP. She turned 4 in December. What I would really
like is to have some friends here that I can support emotionally as
well as receiving support from them.
Faith


--- In sbaofnc@yahoogroups.com, "Susan Collins" <susancollins@...>
wrote:
>
> We have CAP-C services in Forsyth County and I can get you the
name of our
> cap manager and her phone number. I imagine she can get you to
the right
> number for High Point. CAP seems to be held on to tightly around
here and
> no one knows about it. Most of the time Medicaid offices haven't
heard of
> it either.
>
> Susan
>
>
>
> _____
>
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> Mari Pedersen
> Sent: Thursday, January 18, 2007 9:55 PM
> To: sbaofnc@yahoogroups.com
> Subject: RE: [SBAofNC] New to NC
>
>
>
> Al,
>
> I have an 8 yo son with SB, neurogenic bladder and bowel, etc. We
live in NC
> too. Can you explain what you said about where to get started with
services.
> I am not familiar with the acronyms that you used, or even where
to get
> started calling.
>
> Mari
>
> -----Original Message-----
> From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> [mailto:sbaofnc@yahoogroups <mailto:sbaofnc%
40yahoogroups.com> .com] On
> Behalf Of
> Alfred Lyons
> Sent: Wednesday, January 17, 2007 2:30 PM
> To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> Subject: Re: [SBAofNC] New to NC
>
> Hi Faith,
>
> We are new to NC too (since August 2006), and living
> in Asheville. I am unsure how close that is to
> Highpoint. We are still linking to services. We go to
> Shriners Hospital in Greenville, SC. Here in
> Asheville, Mission Hospital has a good parent support
> group for families of special kids (not necessarily
> SB). We called Western Highlands (NC local management
> entity) for help getting linked to services, and to
> get placed on the CAP Waiver wait list. I don't know
> who the LME is for High Point.
>
> Al Lyons
> Al & Karen
> Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)
>
>
>
>
>
> [Non-text portions of this message have been removed]
>