Important post and news release below from another related group
Aina & Pat D
_____
From: sensoryintegrationgroup@yahoogroups.com
[mailto:sensoryintegrationgroup@yahoogroups.com] On Behalf Of Aina & Pat
DeLorenzo
Sent: Friday, April 15, 2011 9:59 AM
To: sensoryintegrationgroup@yahoogroups.com
Subject: RE: [sensoryintegration] Mortality rate is increased in persons
with autism who also have epilepsy
Rima you are a treasured gift to us all! Thanks for this info. This is
important for all to read.... Our Gianna has both Epi and Autism due to
Tuberous Sclerosis Complex http://www.TSAlliance.org and let me tell you it
was not easy to get the diagnosis of Autism as well due to the level of meds
she is on for the seizures and how they interfere with her. All parents of
Autistic children should educate themselves on the many types of seizures
that exist. Some are almost unrecognizable odd little stairs or even
momentary little losses of what could easily be confused for a"drifting off"
mentally when in reality these little spells could be seizures. Like the
info in the article below our best weapon to help and protect our kids is
our own education.
Aina & Pat D
-----Original Message-----
From: sensoryintegrationgroup@yahoogroups.com
<mailto:sensoryintegrationgroup%40yahoogroups.com>
[mailto:sensoryintegrationgroup@yahoogroups.com
<mailto:sensoryintegrationgroup%40yahoogroups.com> ] On Behalf Of Rima Regas
Sent: Friday, April 15, 2011 8:55 AM
To: losangelesfamiliesforeffectiveautismtreatment; rc_moms@yahoogroups.com
<mailto:rc_moms%40yahoogroups.com> ;
autisminterventionsocal@yahoogroups.com
<mailto:autisminterventionsocal%40yahoogroups.com> ; peachheadspecialneeds;
sensoryintegrationgroup@yahoogroups.com
<mailto:sensoryintegrationgroup%40yahoogroups.com>
Subject: [sensoryintegration] Mortality rate is increased in persons with
autism who also have epilepsy
This is an important read. IMO, every child who was diagnosed with any one
of the forms of Autism should be routinely seen by a neurologist from
childhood through early adulthood, even if Epilepsy doesn't run in the
family.
--
Rima Regas
http://www.facebook.com/rima.regas
"The answer to life, the universe, and everything, is 42"
- Douglas Adams (The Hitchhiker's Guide to the Galaxy)
---
Mortality rate is increased in persons with autism who also have epilepsy
Autism Speaks and Miami Children's Hospital examined co-morbidity of autism
and epilepsy in ATP brain donations and CA DDS data to examine differences
in mortality rates when both conditions are present
New York, N.Y. (April 15, 2011) - A comprehensive investigation of brain
tissue donated to the Autism Speaks Autism Tissue Program (ATP), a
postmortem brain tissue donation program, determined that one-third of the
brain donors with autism also had epilepsy, and co-morbidity data from the
California State Department of Developmental Services revealed a higher than
expected rate of mortality in individuals with both autism and epilepsy than
for individuals with autism alone.
"Mortality in Individuals With Autism, With and Without Epilepsy,"
published today in the Journal of Child Neurology, reported that 39 percent
of the confirmed cases of autism from ATP donations also had a confirmed
diagnosis of epilepsy, which is significantly higher than the estimated rate
of epilepsy among the general autism population.
The study also reported that data from the California State Department of
Developmental Services demonstrated a higher than expected rate of mortality
in individuals with autism and epilepsy than autism alone.
These data are consistent with past reports. The paper concluded that when
epilepsy and autism occurred together, the mortality rates increased by more
than 800 percent.
"This study highlights the importance of early identification of epilepsy in
children with autism and of autism in children with epilepsy," said Roberto
Tuchman, MD, pediatric neurologist at Miami Children's Hospital and member
of the Autism Speaks Scientific Advisory Council. "The findings of this
study should motivate the autism and epilepsy communities to increase their
understanding of the risk factors and common mechanisms that can lead to
epilepsy, autism, or both epilepsy and autism. Understanding these early
determinants will allow for the development of effective interventions and
preventive measures and ultimately better outcomes for children with autism
and epilepsy."
It is well established that epilepsy is a major medical disorder that is
often co-morbid with autism in as many as 30 percent of children.
As many as one in 20 children diagnosed with autism by age 3 could either
already have epilepsy or develop epilepsy later in life. As noted by the ATP
more than a decade ago, sudden unexplained death in epilepsy (SUDEP) has
been identified as a cause of death in individuals with autism. Higher
mortality rates than in the general population have been reported among
individuals with autism, however, there is relatively little known about the
specific risk factors that account for the reported higher-than-expected
rate of mortality in autism.
"Sudden, unexpected or unexplained death in autism is often, but not always
related to epilepsy and we need to use caution when interpreting these
data," explained Autism Speaks Vice President of Clinical Programs Clara
Lajonchere, Ph.D. "These findings are important for understanding risk
factors that may contribute to early death in individuals with autism and
further underscore the need for more accurate and accessible records on
cause of death in this population. Furthermore, state surveillance programs
should implement better tracking mechanisms to help us better understand
mortality for individuals with autism and co-occurring disorders such as
epilepsy.
Critical initiatives supported by Autism Speaks brain tissue program will
help bring these issues to the fore and provide information our community
needs to help prevent early death in persons with autism."
###
About Autism
Autism is a complex neurobiological disorder that inhibits a person's
ability to communicate and develop social relationships, and is often
accompanied by behavioral challenges. Autism spectrum disorders are
diagnosed in one in 110 children in the United States, affecting four times
as many boys as girls. The prevalence of autism increased 57 percent from
2002 to 2006. The Centers for Disease Control and Prevention have called
autism a national public health crisis whose cause and cure remain unknown.
About Autism Speaks
Autism Speaks is North America's largest autism science and advocacy
organization. Since its inception in 2005, Autism Speaks has made enormous
strides, committing over $160 million to research and developing innovative
new resources for families. The organization is dedicated to funding
research into the causes, prevention, treatments and a cure for autism;
increasing awareness of autism spectrum disorders; and advocating for the
needs of individuals with autism and their families. In addition to funding
research, Autism Speaks has created resources and programs including the
Autism Speaks Autism Treatment Network, Autism Speaks' Autism Genetic
Resource Exchange and several other scientific and clinical programs.
Notable awareness initiatives include the establishment of the annual United
Nations-sanctioned World Autism Awareness Day on April 2, which Autism
Speaks celebrates through its Light it Up Blue initiative. Also, Autism
Speaks award-winning "Learn the Signs" campaign with the Ad Council has
received over $258 million in donated media. Autism Speaks' family resources
include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed
families, a School Community Tool Kit and a community grant program. Autism
Speaks has played a critical role in securing federal legislation to advance
the government's response to autism, and has successfully advocated for
insurance reform to cover behavioral treatments in 25 states thus far, with
bills pending in an additional 11 states. Each year Walk Now for Autism
Speaks events are held in more than 80 cities across North America. To learn
more about Autism Speaks, please visit www.autismspeaks.org.
About the Co-Founders
Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the
grandparents of a child with autism. Bob Wright is Senior Advisor at Lee
Equity Partners and Chairman and CEO of the Palm Beach Civic Association. He
served as Vice Chairman of General Electric; and as the Chief Executive
Officer of NBC and NBC Universal for more than twenty years. He also serves
on the boards of the Polo Ralph Lauren Corporation, Mission Product, LLC and
the New York Presbyterian Hospital. Suzanne Wright is a Trustee Emeritus of
Sarah Lawrence College, her alma mater. Suzanne has received numerous
awards, the Women of Distinction Award from Palm Beach Atlantic University,
the CHILD Magazine Children's Champions Award, Luella Bennack Volunteer
Award, Spirit of Achievement award by the Albert Einstein College of
Medicine's National Women's Division and The Women of Vision Award from the
Weizmann Institute of Science. In 2008, the Wrights were named to the Time
100 Heroes and Pioneers category, a list of the most influential people in
the world, for their commitment to global autism advocacy. They have also
received numerous awards such as the first ever Double Helix Award for
Corporate Leadership, NYU Child Advocacy Award, Castle Connolly National
Health Leadership Award and The American Ireland Fund Humanitarian Award. In
May of 2010 they received Honorary Doctor of Humane Letters Degrees from St.
John's University in Queens and delivered the commencement address as the
first married couple to be bestowed such an honor.
http://www.eurekalert.org/pub_releases/2011-04/as-mri041411.php#
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