[tri-wings] Re: For Debby..thanks for the info
- From: Fawna <fawna33@xxxxxxxxxxxxxx>
- To: tri-wings@xxxxxxxxxxxxx
- Date: Tue, 19 Sep 2006 16:06:46 -0400 (EDT)
Debby,
>Thanks so much!
You're welcome :)
>It seems it would be beneficial for me to get a copy of the full report to
>know
>exactly what it says. I will share w/you and maybe you can help me understand
>the test results.
Yes, on both counts.
>I am so amazed you know someone w/trisomy 15.(partial 15)
Two actually! The other is a rather complicated karyotype though. Warren is
9 yrs old, and is a trisomy 15 ring mosaic. Rings are actually a deletion from
both
ends of a chromosome that then get distorted because the 2 sticky broken ends
attach
to each other. But in this case he's got almost a whole extra 15 in the ring
formation
in some of his cells, and the normal number in the rest. Here's a link to his
website: http://www.geocities.com/pacificrimmom3/trisomy15.html
Warren's ears have a bit of an odd look about them, but other then that, I'd
never
think about his appearance being "off". Thing is, my hubby had similar ears as
a child,
and his chromosomes tested totally "normal".
>I am wondering if my baby had a full trisomy 15 since the nurse said my baby
>had
>trisomy 15 would she have said partial if thats what it was? I am anxiously
>awaiting
>the test in the mail to know.
Maybe, maybe not. It's kind of a catch 22. A lot of medical types give the
same
grim predictions to all cases regardless of whether they're "full", partial,
mosaic or
even partial mosaics. But then if a child does well, they turn it around and
say,
"That's because they're obviously mosaic!", even if their tests didn't support
that
view. Only way to be sure is to get the report and read it for yourself. And
yes,
there are several people on here who can help you with what it says.
Fawna, mom to Philina 23 yrs (PT6p & Moya Moya Syndrome)
Research Coordinator: Tracking Rare Incidence Syndromes
(TRIS) project - We are currently enrolling all varieties of rare
trisomy, living & deceased, for the main project database. To
include your child's data and help update the medical literature
please see: http://web.coehs.siu.edu/Grants/TRIS/
And to add a link for your Trisomy child's personal web page
please see: http://www.livingwithtrisomy.org/
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line
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