[Vision2020] XYY Syndrome On list
Saundra Lund
sslund at adelphia.net
Sat Nov 12 02:29:01 PST 2005
Hi Phil,
One small point of clarification: my researcher-friend (actually,
acquaintance) is at the National Institutes of Health (NIH) rather than the
CDC :-) The only person I know/knew at the CDC was a malaria expert and
he's retired.
Thanks for providing the link. I think one of the sites I provided is
Danish information more current than the 1991 Danish study you cite.
Indeed, I think the link I was directed to contains updated information to
the original study. My understanding is that our knowledge about 47, XYY
Syndrome (I don't think your description of 47 XYY as a 'handicap' is
realistically accurate) had progressed substantially in the past decade or
so (the study you site was published in 1991). Thanks for providing your
link so V2020 readers can compare the two.
In light of the seemingly more current information in the link I was
directed to, I think folks will understand why I took exception with your
initial post:
"Kids with it have an extra dose of male, but that tends to make them 10-15%
less bright than average, likely to be over agressive, suffer from cerebral
palsy like disfunction and a host of other problems."
The more current information indicates those statements are a perpetuation
of outdated information.
Further, I don't know that I agree with your statement:
"Danes give assistance to parents with children with sex chromosome
abnormalities and we do not here in the US."
My experience is that "We" do offer assistance to kids with speech and
learning delays regardless of the cause. Perhaps access is simpler in
Denmark -- I don't know, but I've emailed a native friend to see if she
knows anything about accessibility to services. However, I have
quasi-professional experience with the Infant Toddler, Head Start, Child
Find, and MSD special educational services programs and found them quite
good. They aren't perfect, of course, and finding the resources can be
challenging, to be sure, but once located, there *are* resources for kids
with 47, XYY Syndrome . . . or other speech and learning challenges
regardless of etiology.
As a "fringe liberal," I naturally have to add that I think we need
increased funding for these vital services, regardless of the origins of
such challenges.
Thanks for the opportunity to provide V2020 participants with an excellent
example of how quickly our knowledge on some chromosomal abnormalities can
advance!
Saundra Lund
Moscow, ID
The only thing necessary for the triumph of evil is for good people to do
nothing.
Edmund Burke
***** Original material contained herein is Copyright 2005, Saundra Lund.
Do not copy, forward, excerpt, or reproduce outside the Vision 2020 forum
without the express written permission of the author.*****
-----Original Message-----
From: vision2020-bounces at moscow.com [mailto:vision2020-bounces at moscow.com]
On Behalf Of Phil Nisbet
Sent: Thursday, November 10, 2005 6:32 PM
To: vision2020 at moscow.com
Subject: RE: [Vision2020] XYY Syndrome On list
Saundra
The study from Denmark is worth looking at to compare it to whar you were
told at the CDC.
http://www.aaa.dk/TURNER/ENGELSK/incidence.htm
Note that the Danes give assistance to parents with children with sex
chromosome abnormalities and we do not here in the US. Behavioral problems
are not significant, however, remedial teaching seems to have a high
incidence for all XXX, XXY, XYY and other such children. The study notes
that the kids normalize when they reach 15-17, but have younger probelms in
learning.
They had the following recommendations;
The information and assistance given to parents of a child with a sex
chromosome abnormality can be of many different kinds:
1. General information about the mental and physical development of children
and adults with the chromosome constitution in question as well as
information about hormone treatment in Turner syndrome and Klinefelter
syndrome.
2. Information about what they can do for their child according to the needs
revealed by follow-up studies, ie, stimulation of different types,
participation in group activities, sports, and creative activities of
different kinds.
3. Help to get their child into a good day institution and/or kindergarten
at an early age.
4. Help to get extra stimulation in kindergarten if needed.
5. Help to get speech therapy if needed.
6. Help to get the best possible tutorial assistance-remedial teaching
measures if needed and for as long as required.
7. Help to change schools if necessary, for instance to a school with better
teaching, earlier access to remedial teaching, or to special small group
teaching including teaching outside the school.
8. Psychological-psychiatric assistance if needed.
9. Recommendation to attend regular follow-up clinics for children with sex
chromosome aberrations if such service is available.
10. Recommendation to join a self-help group, contact group, if such groups
exist, or encouragement to start such groups, if they are not available.
Phil Nisbet
>From: "Saundra Lund" <sslund at adelphia.net>
>To: <vision2020 at moscow.com>
>Subject: RE: [Vision2020] XYY Syndrome
>Date: Thu, 10 Nov 2005 12:59:51 -0800
>
>Phil Nisbet wrote:
>"Kids with it have an extra dose of male, but that tends to make them
>10-15% less bright than average, likely to be over agressive, suffer
>from cerebral palsy like disfunction and a host of other problems."
>
>Being somewhat familiar with 47, XYY Syndrome, I'd like to ask Mr.
>Nisbet if he'd care to cite his sources as the information he presents
>is contrary to what I've learned.
>
>Specifically with respect to "brightness," boys and men with 47, XYY
>Syndrome are typically of NORMAL intelligence.
>
>Also, current thinking and studies do NOT support the notion that XYY
>males are more aggressive than their peers. There seems to be a
>tendency towards being more *active,* but that's not the same as being
>overly aggressive, an incorrect stereotype those familiar with the
>population have worked very hard to dispel.
>
>I had reason to be chatting with a researcher at the National
>Institutes of Health this morning, and he asked me to pass along the
>following resources for those interested in learning more accurate
>information about 47, XYY
>Syndrome:
>http://www.aaa.dk/TURNER/ENGELSK/XYY.HTM
>http://mchneighborhood.ichp.edu/pacnorgg/media/Sex_Chrom/xyy_eng.pdf
>
>
>Saundra Lund
>Moscow, ID
>
>The only thing necessary for the triumph of evil is for good people to
>do nothing.
>Edmund Burke
>
>***** Original material contained herein is Copyright 2005, Saundra Lund.
>Do not copy, forward, excerpt, or reproduce outside the Vision 2020
>forum without the express written permission of the author.*****
>
>
>-----Original Message-----
>From: vision2020-bounces at moscow.com
>[mailto:vision2020-bounces at moscow.com]
>On Behalf Of Phil Nisbet
>Sent: Wednesday, November 09, 2005 6:40 PM
>To: vision2020 at moscow.com
>Subject: [Vision2020] XYY Syndrome
>
>Not to put too fine a point on it, XYY syndrome is a not very fun handicap.
>
>Kids with it have an extra dose of male, but that tends to make them
>10-15% less bright than average, likely to be over agressive, suffer
>from cerebral palsy like disfunction and a host of other problems.
>Between 1 in 878 and
>1
>in 1,768 boys are born with this ailment and it is not treatable, there
>is no cure.
>
>If you think of all the potentially worst traits that we males are
>likely to inflict upon this world and think about doubling the thing
>that makes us so, then figure what a doubling of it would make a person
>like, XYY is the answer.
>
>Just something to think about as you beat each other over the head.
>
>Phil Nisbet
>
>
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