Carole,
Hope you don't mind me revisiting this. My 4 yr old son has CP and
we banked my 2 yr old daughter's blood. Unfortunately they are
different blood types, but I'm hoping our blood bank has some sort of
exchange program. We live in NC and my son goes to Duke to see
certain specialists, but this is the first I've heard of work with
stem cells.

Did you bank through Carolinas Cord Blood bank to be offered this
program at Duke? Or did they work with another bank (your bank)?

Did the procedure seem to have much impact? Many risks?

Thanks much for any info,
Lisa
(mom to Joshua, 4, with CP, Hydrocephalus w VP shunt, CVI, and
profound cognitive delays; my happy combat crawling fiend)
--- In cerebralpalsy@yahoogroups.com, Carole Rosen <cbr424@...> wrote:
>
> Michele & Castle,
>
> Dr. Kurtzberg is only doing this procedure with children who have
banked their own cord blood. We used one of Hayden's vials of two we
had stored at the time of her birth. I was under the impression that
she received 253 million stem cells. Maybe, that was the total
amount of cells. I don't know.
>
> Also, hopefully our insurance is paying for the procedure. It is
billed through Duke's offices and they said they haven't had any
issues having it covered through whatever codes they used. She did
make it clear that the most that would not be covered could be the
actual reinfusion, but I think that was several thousand dollars tops.
>
> My contact for everything was June who is the nicest person ever.
She really coordinated everything each step of the way. We met Dr.
Kurtzberg the day of the infusion. She is awesome. Again, I could
not have asked for a better experience going through this treatment.
I always felt comfortable and in tremendously competent hands.
>
> I have listed June's contact info below:
> ----------------------------------------------------------
> June Allison, RN, CPON
> Clinical Operations Director
> Pediatric Blood and Marrow Transplant
> Carolinas Cord Blood Bank
> (919) 668-1125 Voicemail
> (919) 668-1180 Fax
> allis006@...
> ----------------------------------------------------------
>
> She was always great about answering my e-mails.
>
> Also, the first contact I made with someone who had gone through
this was with Mary Schneider, smkschneider@... , whose son Ryan went
through the reinfusion with fabulous results. She put me in touch
with some other mothers who also had good experiences with their
kids. It seems to me that everyone I spoke to definitely sees gains
attributed to the SCT, but the range of changes depends on the level
of injury and perhaps how old the child is at the time of treatment.
I am hopeful that we will see some wonderful gains for Hayden at her
age of 4.5 yrs. She is doing well with HBOT and ABR therapy which I
happen to love. Also, swimming and hippotherapy are great fun for
her.
>
> Let me know if you have any other questions.
>
>
> All the best,
>
>
>
>
> Carole Rosen
> Mom to Hayden 1/17/03
> HIE, Spastic Quad, Delicious
> ABRing since 4/06
> Baby Boy on the way 9/07
> Chicago, IL, USA
>
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