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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday December 18, 2001
INDEX:
* Getting The Needle
Over MMR
* A home for understanding
* Organization throws holiday party for families of
disabled children
* Adjunctive Antipsychotic Treatment of Adolescents With Bipolar
Psychosis
* Surgery For Temporal Lobe Epilepsy More Beneficial Than Medication
Over Time
* Understanding of How Vagus Nerve Stimulation Treats Epilepsy
* Valproate Use Linked With Metabolic Bone Disease in Young Adults
******************************
Getting The Needle Over MMR
The Prime Minister's sister-in-law Lauren Booth has accused the Government of
double standards over the MMR vaccine.Cherie Blair's half-sister says ministers
should tell the truth about the combined measles, mumps and rubella inoculation
given to young children.
"Where my daughter's health is concerned I'm more inclined to believe
information I find on the Internet than to swallow advice from a Government
leaflet," Ms Booth told the Mail On Sunday. 'Breezy recommendation'"How
can a Government, which in one breath advises us to check the labels on food
for additives and E numbers, then so breezily recommend vaccinations containing
mercury and formaldehyde for babies less than nine weeks old?"Ms Booth has
refused to allow her 12-month-old daughter Alexandra to have the MMR jab.The
Department of Health has insisted that MMR, rather than single injections, is
the most effective way to protect children against the illnesses.Autism linkBut
about 2,000 families have taken legal action, claiming their children have been
damaged by the jab, with many believing it has triggered autism and bowel
disorders.Earlier this month, Dr Andrew Wakefield, who researched the possible
link between the vaccine and autism, resigned from his job at London's Royal
Free and University College Medical School.
Last Modified: 15:58 UK, Sunday December 16, 2001
http://www.sky.com/skynews/article/0,,30700-1038451,00.html
******************************
A home for understanding
PLUS provides caring living environment for people with autism
By Scott Brinton
Robert Zbythiewski was born the second of twins
at a dangerously low weight -- two pounds. His mother, Natalie, feared for his
health at first. Robert, however, fought and grew and survived.
As time passed, Natalie started to worry about
Robert's development. At two pounds, he had at birth already fallen behind
other children physically. His mother, though, could not be sure of his
cognitive growth. She could only wait and watch and hope.
Robert's twin, Richard, met each developmental
milestone on time, but Robert did not. Robert was later diagnosed with mental
retardation with autistic-like tendencies and cerebral palsy, which causes
stiffness and weakness of the arms and legs.
Over the years, Richard took part in the
activities that most young people do. "He went to school and had
girlfriends," says his mother. Robert, however, could never lead such a
life.
Still, Richard and Robert grew close, and Richard
became highly protective of his brother, including him in his circle of
friends. Unable to go it alone, Robert would "grab onto [Richard's]
shoulders and walk behind him," says their mother.
Now, Richard and Robert are 26 years old, and
Richard is pursuing a master's degree in occupational therapy. Natalie
Zbythiewski is 59 and, in recent years, she has faced the difficult question
that many parents of people with disabilities must address -- how do you care
for your adult children as you yourself age?
Fortunately for her and Robert, she found PLUS
(Programs for Living, Understanding and Services for Autistic and Autistic-like
Adults), a non-profit, social-service agency providing group homes for adults
with autism.
The agency started in 1986 with one home in
Uniondale and has expanded to include homes in East Meadow, Levittown, North
Merrick and Seaford, as well as a central office in Wantagh. PLUS homes draw
people from throughout Nassau and Suffolk counties. Robert Zbythiewski, originally
of Huntington, now lives in the Seaford home, where he is thriving, says
Natalie Zbythiewski.
PLUS runs with a $4.5-million annual budget,
which is funded largely through Medicaid. It boasts a total staff of 115
employees, including a team of psychologists, social workers and nurses.
Zbythiewski says PLUS offers more than shelter
for residents, who are known in the group-home field as "consumers."
It provides compassionate care and continuous mentoring for them.
Zbythiewski should know. She is not only the
parent of a consumer. Eight years ago, she also became supervising nurse for
the five PLUS group homes.
Above all, people with autism "need
understanding," says Zbythiewski, who is the mother of six.
The Herald recently visited the North Merrick
PLUS home, a one-story, ruddy-red ranch that sits in a quiet, residential
section. It is like most any other home, with a living room, dining room,
kitchen and bedrooms for consumers.
Subhead: What is autism?
Estimates are that 500,000 people in the United
States, or 1 in 600, suffer from autism. It is a neurological disorder whose
cause remains unknown. Recent autopsies suggest that it results from irregular
clumping of cells in areas of the brain that control speech and social skills,
says Terri Cancilla, PLUS executive director and a registered nurse.
People with autism often do not speak. If they
can, they often do so in staccato clips. Think Dustin Hoffman in "Rain
Man." His character had autism.
When asked what he likes to do at PLUS, resident
Eddie Bonds, 36, says, "I like to go to show. Sometime, I like to sing. I
like to dance, Rudolph the red-nosed reindeer." Then, he reminds himself,
"Eddie, you behave yourself."
He quickly returns to his list of favorite
activities, stopping at times to eat his dinner of meatloaf, rice and salad.
"Special Olympics. I get a medal, and then we had pancakes, and then we
had coffee," says Bonds.
Resident Stuart Maher, 33, also speaks about what
he likes to do. "I like to play with toys. Tinker toys. I like to
sing."
He is asked what he likes to eat. "Apple
pie."
"What do you buy at the supermarket [where
he helps shop for the home]?"
"Food."
Then, Maher adds, "I like to build a radio
tower."
Many people with autism deal poorly with change,
such as Hoffman's character. At PLUS, says Cancilla, some residents are thrown
off if the bus that picks them up for programs is a different color.
People with the disorder can be mentally retarded,
such as PLUS residents. They, however, can display high intelligence. Such
people are known as autistic savants.
Hoffman's character was a mathematics genius.
Like most people with autism, though, he lacked social skills and displayed the
disorder's "ritualistic" behaviors, such as rocking and hand
clasping. People with autism might also be obsessive-compulsive, continually
checking to make sure that a door is locked or that a stove is turned off.
Still other people with the disorder might show only mild symptoms and fit into
society unnoticed.
"No two cases are alike," says
Cancilla.
Suhbead: Meeting consumers' needs
At the North Merrick home, two residents share
one bedroom, but that is about to change. PLUS recently received a $230,000
grant from the county Department of Housing and Urban Development to build an
extension onto the house, which will give each of the home's 10 consumers his
or her own bedroom.
During summer, residents can swim in the
in-ground pool out back. Year-round, they can also take part in field trips to
supermarkets, bowling alleys or restaurants. Five days a week, they attend
"daily-living classes" run by organizations such as the Association
for Children with Learning Disabilities.
"We provide a living environment that is
normalized in a community," says Cancilla. "They [the residents] live
as a family. We try to meet their needs in terms of what they like."
Indeed, the PLUS home is a world away from the
lifeless institutions in which people with autism were housed as late as the
1960s and '70s. There, they were given food and powerful neuroleptic and
psychotropic drugs that essentially tranquilized them. Many times, they lived
in squalor, such as at the infamous Willowbrook institution.
At the time, people with autism were also treated
as insane. Children with the disorder were often diagnosed as schizophrenic. In
recent years, autism rates have climbed. Cancilla believes that is because far
fewer people with the disorder are being diagnosed as mentally disturbed.
Many PLUS residents who came from institutions
during the 1980s knew nothing, not even how to open a door, says Cancilla. But
with time and love, they learned. One woman needed two years to grasp how to
open a door.
PLUS counselors began by simply allowing her to
touch the door handle, then reinforcing the behavior positively. She liked
having her nails done, so that became her reward for touching the door.
"At some point, the reinforcer became I can
open this door, and I will go into the other room," said Cancilla.
Karin Myers is an occupational therapist who
works closely with PLUS consumers to teach them daily-living skills, such as
opening a door, dressing or brushing their teeth. When residents learn a new
skill, Myers says, "You feel very good. You feel like it's worth your
work. It's very rewarding."
People with autism often appear aloof from their
surroundings and other people. They, however, feel emotions such as joy,
sadness and frustration like anyone else, says Cancilla.
They simply cannot express their feelings with
speech. So, they must resort to other means. Some use sign language. Others
point to pictures in a book. And some, incapable of any communication, might
use a whole-body approach to expression. For example, if their ears ache, they
might bang their heads against a wall out of pure frustration.
Patience, notes Cancilla, is key to understanding
residents' wants and needs, which at first might appear incomprehensible.
Art and music therapy play an important role in
consumers' treatment, as they provide alternative forms of expression. And some
residents become outstanding artists, creating exquisite papier-m‰chŽ
dolls or paintings.
"The old theory that there is no hope for
people with autism, that there is no cure, the attitudes have changed. They can
make progress," says Cancilla.
Still, for parents, autism can bring much pain.
Bea Karnette, a PLUS board member whose daughter, 44, now lives in the Uniondale
home, says her greatest wish is "that they come up with a magical pill for
autism so that my daughter can live a normal life, so she can go to college and
have children, and I can have grandchildren.
"But I don't think that's going to happen in
my lifetime."
©Bellmore
Herald 2001
http://www.zwire.com/site/news.cfm?newsid=2780622&BRD=1604&PAG=461&dept_id=60129&rfi=6
******************************
Organization throws holiday party for families
of disabled children
By ERIC
ADLER - The Kansas City Star
Date:
12/15/01 22:15They all have their stories, the ones given to them by "the
experts." Leia Holley of Bonner Springs was told that her son, Sean, 9,
born with autism, probably should be institutionalized. Wesley Moore of Paola
was told that his son, Michael, 12, born with Down syndrome, might just be a
bit too disabled to make much progress. "We don't know how much gray
matter we're dealing with here," a school administrator once told Moore.
Shannon Shearer of Kansas City, Kan., was told that her daughter, Baleigh, was
born so prematurely (she weighed 13 ounces) that she probably would be mute,
blind and unable to walk. "Look at her now," Shearer said, looking
proudly at Baleigh, now 4, walking, talking and seeing the world just fine. On
Saturday afternoon, Holley, Moore and the Shearers were among about 100 people
-- 40 Kansas families -- who gathered at 2220 Central Ave. in Kansas City,
Kan., for a holiday party run by Families Together, a nonprofit organization
supported primarily by state and federal funds whose goal is to serve Kansas
families of children with disabilities. It helps parents find just the right
programs for their children so they attain their true potential. It gives
parents other parents to talk to. It helps families navigate and find out
what's available inside the labyrinth of school, state, federal and private
agencies. It keeps them up to date not only about new medications, but also new
legislation. On Saturday, though, the point was just to throw a Christmas party
-- with food and clowns and Santa Claus delivering gifts -- and to let the kids
have a good time and feel safe among children like themselves. Wanda Garret of
Kansas City, Kan., came with daughter Nichelle, 9, nephew Damien, 10, and
daughter Naomi, 13, who has cerebral palsy. Shannon and Edward McKelvin of
Bonner Springs came with their daughters Abbreegayl, 2, Kassandra, 5, and
Jacob, 7, who has Down syndrome. Wanda Jeffery of Kansas City, Kan., brought
her sons, one born with epilepsy and a learning disorder. "As parents with
kids with special needs, you don't get to meet that many other parents,"
Jeffery said. "This is nice." To reach Eric Adler, call (816)
234-4431 or send e-mail to eadler@kcstar.com
http://www.kcstar.com/item/pages/local.pat,local/3acd364a.c15,.html
******************************
Adjunctive Antipsychotic Treatment of
Adolescents With Bipolar Psychosis
VIVIAN
KAFANTARIS, M.D. ; DANIEL J. COLETTI, PH.D. ; ROBERT DICKER, M.D. ; GINA
PADULA, M.D. ; JOHN M. KANE, M.D.
From the Department of Psychiatry, Hillside Hospital, a
division of the North Shore-Long Island Jewish Health System, Glen Oaks, NY
11004.
JOURNAL OF THE AMERICAN ACADEMY OF CHILD & ADOLESCENT
PSYCHIATRY 2001;40:1448-1456
ABSTRACT Background: A combination of an antipsychotic medication and a mood
stabilizer is often used for initial treatment of acute psychotic mania.
However, the optimal duration of this adjunctive antipsychotic medication is
unknown. Method: As part of a lithium efficacy study, acutely manic
adolescents with psychotic features were given open combination treatment with
lithium and an adjunctive antipsychotic medication. If the psychosis resolved,
the antipsychotic medication dose was gradually tapered and discontinued after
4 weeks of therapeutic lithium levels. The subject was then given a trial of
maintenance lithium monotherapy for up to 4 weeks. Results: Significant
improvement was seen in 64% of the sample with psychotic features after 4 weeks
of combination treatment. However, few maintained their response after
discontinuation of the antipsychotic medication. Successful discontinuation of
antipsychotic medication in this sample was associated with first episode,
shorter duration of psychosis, and the presence of thought disorder at
baseline. Conclusions: Adjunctive antipsychotic medication needs to be
maintained for longer than 4 weeks in the vast majority of adolescents with
psychotic mania, even though the manic and psychotic symptoms have resolved and
lithium treatment is maintained. Future studies to determine the optimal
duration of adjunctive antipsychotic medication treatment are warranted.
Key Words: bipolar
; psychosis ; treatment
http://ipsapp003.lwwonline.com/servlet/GetFileServlet?J=2600&I=87&A=16&U=1&T=0
******************************
Surgery For Temporal Lobe Epilepsy More
Beneficial
Than Medication Over Time
December 11, 2001
http://ipn.intelihealth.com/IPN/ihtIPN?st=23883&t=7223&c=341931
NEW YORK (Reuters Health) - In a cohort of patients with temporal lobe
epilepsy, those treated surgically report significantly higher quality of
life measures than those treated medically, according to three-year follow-up
data presented last week during the American Epilepsy Society meeting in
Philadelphia.
"All the beneficial effects of surgery are sustained at three years,"
Dr.
Samuel Wiebe of the University of Western Ontario in London, Canada, told
Reuters Health.
Dr. Wiebe and colleagues compared long-term quality of life measures in 40
patients who were randomized to surgery versus 40 patients randomized to
medication therapy for temporal lobe epilepsy.
The one-year data, which were published in the August 2nd, 2001 issue of The
New England Journal of Medicine, show that 58% of the surgical group were
seizure-free compared with just 8% of the medication group. Of those not se
izure-free, 20% of the surgery group compared with 87% of the medication
group had one or more seizures a month.
In all quality of life measurements except the impact of epilepsy, 36% to 51%
of surgical patients achieved reliable improvement compared with just 7% to
18% in the medical group. No deaths occurred in the surgery group, Dr. Wiebe
added, but one patient in the medication group died.
At the end of the first year 90% of the patients originally randomized to
medication opted to undergo surgery, Dr. Wiebe noted. He and his colleagues
continued to assess quality of life measures including general health,
memory, seizure worry, social function, emotional well-being, and medication
side effects in this population.
In the patients who underwent surgery, "some of the benefits, specifically
the impact of epilepsy, continue to increase through 3 years of follow
up,"
Dr. Wiebe said.
He indicated that two of the surgery patients reported a decline in memory
function that impacted their occupation and that their memory has not
improved over time.
******************************
Understanding of How Vagus Nerve Stimulation
Treats Epilepsy
http://news.excite.com/news/pr/011206/pa-cyberonics-vns
PRNewswire - A study presented yesterday at the annual meeting of the
American Epilepsy Society/American Clinical Neurophysiology Society
indicates that seizure control improves in patients with epilepsy when vagus
nerve stimulation (VNS) increases blood flow in the thalamic areas of the
brain.
VNS causes activation of synaptic activities at
multiple sites in the
brainstem and both cerebral hemispheres. The results of the study confirm
earlier evidence that showed that altered thalamic processing contributes to
the anti-seizure effects of VNS.
"The study results are significant because
they show that if patients
respond to VNS therapy in the short-term they will continue to respond
favorably over the long-term," said Thomas R. Henry, MD, Neurology, Emory
University. "In addition, these results also suggest that if patients
undergoing VNS therapy show bilateral thalamic activation in the short-term,
we can accurately predict long-term seizure control -- something that has
not been possible up until now."
The study involved 11 patients with partial epilepsy who were
uncontrolled with AEDs and who had complex partial and general tonic clonic
seizures. During one year of VNS, seizure control improved in most patients
compared to baseline seizure rates, with a reduction of up to 91 percent.
Each patient had brain flow imaging with positron
emission tomography
after three months of VNS. Imaging compared VNS-on versus VNS-off states and
showed numerous sites of brain activity with VNS on. Among those sites, only
the right and left thalami (which may manage excitability of the cortex in
people with epilepsy) were significantly associated with greater seizure
reduction.*
"Our study shows that VNS may benefit other
blood functions," stated
Henry. "Blood flow activations in frontal cortex and subcortical sites may
alter attention, memory and mood. These activations may not serve to control
seizures but might benefit depression and memory impairment."
Nearly 2.3 million Americans are affected by
epilepsy, a chronic
neurological disorder. Recent studies have shown that nearly 30 percent of
people with epilepsy may not respond adequately to drug therapy. VNS is
indicated in the United States for seizures in adults and adolescents over
12 years of age with partial onset seizures that are refractory to
antiepileptic medication.
About VNS
VNS stimulates the limbic region of the brain
that is responsible for
mood, motivation, sleep, appetite, alertness and seizures. A stopwatch-sized
generator -- the Neurocybernetic Prosthesis (NCP) System -- implanted just
under the skin in the left chest area delivers pre-programmed, mild,
intermittent electrical pulses to the left vagus nerve, 24 hours a day.
VNS is safe and effective. VNS has not been
reported to cause the type
of side effects associated with AEDS (e.g., cognitive dysfunction, liver
damage and blood disorders). Common side effects associated with VNS are
hoarseness, sore throat, shortness of breath and coughing, all of which
typically occur only during stimulation and diminish over time.
VNS with the Cyberonics NCP System was approved
in 1997 for use as an
adjunctive therapy in reducing the frequency of seizures in adults and
adolescents over 12 years of age with medically refractory partial onset
seizures. In addition, the NCP System is currently approved for epilepsy in
all the member countries of the European Union, Canada, Australia and other
markets. VNS with the Cyberonics NCP System was also recently approved for
sale in the European Union and in Canada as a treatment of depression in
patients with treatment-resistant or treatment-intolerant major depressive
episodes including unipolar depression and bipolar disorder (manic
depression).
******************************
Valproate Use Linked With Metabolic Bone Disease
in Young Adults
http://orthopedics.medscape.com/reuters/prof/2001/12/12.11/20011210clin011.htm
l
NEW YORK (Reuters Health) Dec 10 - In a cohort of young adults with epilepsy,
those exposed to the hepatic enzyme inhibitor valproate for 5 years or longer
were more likely to have abnormal bone density than those taking
hepatic-enzyme inducing anti-epileptic drugs (EIAED's) for the same length of
time, according a report presented last week at the American Epilepsy Society
meeting in Philadelphia.
Seventy-one percent of those taking valproate "had abnormal bones"
compared
with 36% taking EIAED's, Dr. Joyce Liporace of Thomas Jefferson University in
Philadelphia told Reuters Health.
Dr. Liporace and colleagues performed dual-energy X-ray absorptiometry (DEXA)
scans and measured bone mineral density (BMD) at the spine (L1 through L4)
and hip in 102 patients, 40 years old and younger, who had epilepsy for a
mean 15.6 years. Patients with chronic exposure to glucocorticoids, reduced
ambulation, and thyroid or renal disease were excluded from the study
population.
"The overall risk of metabolic bone disease in the study population was
34%,"
Dr. Liporace said, but there was a trend for men to be more frequently
affected. Of the 29 men studied, 48% had metabolic bone disease (10 with
osteopenia and 4 with osteoporosis). Conversely, the investigators found
metabolic bone disease in 29% of the women (21 of 73), including 19 with
osteopenia and 2 with osteoporosis.
Dr. Liporace's group also found that a lower body mass index, independent of
gender, was associated with an increased risk of bone disease.
Women are often only screened for bone disease at menopause, Dr. Liporace
said, "and most men are never screened." She and colleagues recommend
that
patients exposed to any anti-epileptic drug for 5 years undergo DEXA scan
screening for bone disease. She noted that earlier screening might be
appropriate in those with a low body mass index.
******************************
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