Tourette Updates

New drug, tested by local doctor, offers hope for Tourette's
patients
By ELIZABETH SIMPSON, The Virginian-Pilot
© October 6, 2003

At first, the 7-year-old's problems in school seemed minor.
A few fights with his classmates. Trouble sitting still. Falling
behind in classwork.
But there also were the odd mannerisms. Touching the ground with
his hand every so often. Knocking his knees together. Excessively
blinking his eyes.
Classmates were starting to tease him. ``I annoyed them,'' said the
boy, now 12, who lives in Suffolk but asked that his name not be
used.
Over time, the mannerisms waxed and waned, but the boy's problems in
school and social circles worsened.

At age 10 came a diagnosis that helped identify his problem:
attention deficit-hyperactivity disorder. And then a year later came
another diagnosis that completed the picture: Your son also has
Tourette's syndrome, a neurologist told his parents. That disorder
is characterized by involuntary movements called tics.
Alone, either Tourette's or attention deficit disorder can be a
challenge. Together, which is the case for nearly half of the
children with Tourette's, they are misery makers. While there are
stimulants to treat those with attention disorders, doctors say they
sometimes exacerbate the tics that can cause children with
Tourette's to feel like outcasts.
But a nonstimulant drug called atomoxetine, used to treat attention
disorders, has improved the outlook for the boy and others.
Last year, the boy became one of 148 children to participate in a
clinical trial of one version of the medication developed by Eli
Lilly & Co.
Dr. Donald Lewis, a pediatric neurologist at Children's Hospital of
The King's Daughters in Norfolk, presented preliminary results of
the trial at a national conference last week in Miami. The study
also is being published in the Annals of Neurology.
Lewis, who helped coordinate the trial, said the drug not only
didn't worsen the patients' tics, but in many cases, made them
better.
That was the case for the Suffolk boy.
``Before, I was all hyper and jumpy,'' he said. ``I was always
talking and jumping and running around. Now I can concentrate more.
I feel calmer.''
He credits the medication for enabling him to move from special-
education classes -- where he spent the last two years -- into a
regular seventh-grade class.
Sue Levi-Pearl, vice president of medical and scientific programs
for the National Tourette Syndrome Association, said that early
results of the drug's studies look encouraging, but she wants to see
more study. She said a major difficulty of treating children with
Tourette's who need medication is finding one that works.
``There is a host of different drugs that seem to work for only some
of the people some of the time,'' Levi-Pearl said in an e-mail
response.
Not all children with Tourette's or attention disorders need
medication, Lewis said, but in some cases, medication can help a
child cope better with the symptoms.
Parents of local children with Tourette's hope the study will not
only help those children already diagnosed with the syndrome, but
also will raise awareness for parents and doctors of children who
have not been diagnosed.
Symptoms of Tourette's syndrome -- which an estimated 100,000 people
in the country have -- usually appear before age 18. Men and boys
are more likely to have the syndrome than women and girls. The tics
can change from one movement to another and also vary in severity
over time, so they may not be recognized as signs of Tourette's for
years.
About a third of the children who have tics outgrow them, another
third continue to have mild variants and another third continue to
have them at the same level into adulthood.
Many children spend years being made fun of in class and struggling
with poor grades because their tics distract both them and their
classmates. Their behavioral problems -- like angry outbursts --
often land them in counselors' offices. Teachers tend to view them
as troublemakers; students think of them as too weird to befriend.
A familiar story among Lewis' patients is how long it took them to
get a diagnosis of Tourette's.
The mother of another boy with Tourette's said her son, who is now
11, started exhibiting unusual behavior when he was about 8. He
sniffed and cleared his throat a lot even when he didn't have a
cold.
The boy -- who lives in Chesapeake and also didn't want his name
used -- was referred to an allergist, who could find no allergies.
Then, he was sent to an ear, nose and throat doctor, who gave him
the all-clear as well.
At the same time, the boy was having behavioral problems. One minute
he would be calm and happy, and the next moment, a minor incident
would cause a burst of anger.
Finally, a pediatrician friend suggested the boy's mother take him
to see a neurologist.
She went to see Lewis, who quickly noticed the boy had tics. The boy
now has been diagnosed with Tourette's and an attention disorder.
He is not one of the children who were part of the atomoxetine
study, but he does take the medication.
The Chesapeake mother said a combination of medication and coping
techniques have helped her son during the past year. For a while, he
carried balls in his pockets that he squeezed when he felt a burst
of energy coming on.
``There's so much that can be done once there's a diagnosis,'' the
mother of the Chesapeake boy said. ``But if they're not diagnosed,
they're labeled as problem children or bad kids.''
Reach Elizabeth Simpson at 446-2635 or
elizabeth.simpson@...
Linked from:

http://home.hamptonroads.com/stories/story.cfm?story=60638&ran=100813

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Personal Interests Story For Girls and Daughters


Chuck Best passes his gymnastic skills on to 3 generations

Sun, Oct 5, 2003
By Leanne Phillips
Truth Regional Reporter


ELKHART -- Walking into his high school homeroom one day in 1945,
something happened to Chuck Best he'll never forget. It was unusual
for a guy at the time, but he was selected to be a cheerleader.
Best was on the gymnastics team in high school in Cambridge, Ohio,
and was a national champion in tumbling, but never dreamed of
cheerleading. Before he knew it, he, along with another male and two
females from the gymnastics team, made up the school's first co-ed
cheerleading squad.

"We started a practice together and didn't know a thing about
cheers," he said, smiling. "We did the normal sis-boom-rah."
Best said the boys did the foot pitches to hold the girls up, and
the foursome did back handsprings for every point the team scored.
He said back then it was easy to get the crowd going since mostly
students came to the games and not many adults.

"There was a lot of noise being made at that time," he said.
Best moved to Elkhart in 1949 at age 21. It wasn't long before he
started the first girl's gymnastics team in town at the old YMCA on
Franklin Street, where he began his career as a volunteer tumbling
coach. He was later asked to be head physical education director,
and coached a number of champions, both girls and boys.
Best, along with friend John Hamilton, started the first
cheerleading classes at the Y in the 1960s.

"There has been tremendous growth in cheerleading since back then,"
Best said. And he would know, considering he passed along the
cheerleading gene to his daughter and granddaughters.
The Y was a second home to the Best children, Susie, Gary, Larry and
Chuck.

"I hung out at the Y all the time because of dad," Susie said. "He
always coached us. He was just a major coach all our life."
Susie quickly became interested in cheerleading, while her brothers
took up the trampoline. The family had a trampoline act they
performed at fairgrounds and churches.

Susie cheered throughout junior high and four years at Elkhart
Central High School, where she graduated in 1981. "I was always
interested in it," she said, adding she planned to cheer in college,
but got married instead.

Best and his wife, Bonnie, have seven grandchildren, but Susie's two
daughters, Jena and Kaley, were the first to express any interest in
carrying on the family's cheerleading tradition.
Just like her father coached her, Susie coaches her daughters at
home and at Elkhart Elite, where she is an all-star cheerleading
coach.

Jena, 16, despite a diagnosis at age 5 of Tourette's syndrome,
started gymnastics when she was 9 at Elkhart Elite. "It (Tourette's)
started getting pretty bad around fifth grade and it was affecting
her self-esteem," her mom said.

One of the side effects of Tourette's is incessant movements such as
jerking of the head and kicking. But that hasn't stopped Jena, who
began taking medication around the same time she started gymnastics.
"Being in a sport helped her concentrate on other things as opposed
to that problem," Susie said. "It completely helped her self-esteem."

Jena said, "When I was at practice at Elkhart Elite, I always
watched the cheerleaders." She got on the all-star cheerleading team
when she turned 11 and went to nationals her first year, where the
team placed third.

Best said, "I think through her gymnastics and her acceptance of her
condition, and also through her cheerleading, it has been a great
outlet for her. Several times she has been asked to speak to groups
about her affliction, which has helped her self-confidence. I am
really proud of her from that standpoint. Her involvement in
cheerleading and other activities shows the courage to overcome that
kind of affliction." Jena said, "My grandpa was the one who taught
me my first back handspring." As the story goes, grandpa Chuck got a
little teary when Jena did that first back handspring.

Jena has given a number of speeches about her condition at Concord
High School, where today she is on the varsity cheerleading squad.
Not long ago, a parent from the school gymnastics team had a child
diagnosed with Tourette's syndrome and Jena encouraged the family
not to panic, telling them their child could achieve whatever they
wanted.

In addition to cheerleading, Jena has taken an interest in dance and
is involved in choreographing at Elkhart Elite and at Concord.
She has been an encouragement and inspiration to many people,
including her little sister, Kaley.

The 10-year-old started out at the age of 2 in gymnastics and did
her first back handspring when she was 3 years old.
"Within five minutes, she learned a back handspring on the
trampoline," her mom said.

Kaley progressively moved into higher levels of gymnastics, and
transitioned to cheerleading at Elkhart Elite at age 6. She tied for
second place in individual cheering and dance at Jam Fest National
in 2001. Her team has gone to the national program every year for
five straight years. Kaley hopes to continue her cheerleading career
throughout junior high, high school and college.

The cheerleading teams at Elkhart Elite are co-ed, with the
organization the first in this area to go co-ed three years ago.
"Having the guys there has been a lot of fun for the girls," Susie
said. "We realized a huge need for it if these girls are interested
in going on to cheer at the college level."

The idea of co-ed squads was not foreign to someone whose father was
a cheerleader.

Linked From:
http://www.elkharttruth.com/news/279689993029612.bsp

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