TOURETTE SYNDROME SCIENCE FAIR PROJECT Silver Honour

JUNE 2014
Page 1
MOVEMENTS
A TSFC – Winnipeg Affiliate Newsletter
TOURETTE SYNDROME SCIENCE
FAIR PROJECT
MEMBERS
Silver Honour Awarded at Divisional Science Fair
ARE OUR STRENGTH
By: Austin and Tricia Dilworth
Members are important to the TSFC
as it shows support of the efforts of
our organization. This strength of
membership is required when our
organization undertakes applications for
grants or interacts with government as
it “validates the need.” Single or family
membership categories are available and
can be conducted online at: tourette.ca
My name is Austin Dilworth and I am 9 years old. I was diagnosed with Tourette
Syndrome in March 2012. This year, I had an opportunity to participate in my school
Science Fair. I chose to do my project on Tourette Syndrome.
I received a gold honour at my elementary school and an invitation to attend the
Divisional Science Fair on April 09, 2014. There, I received a silver honour for my
study project! I am very proud to say I have educated my friends, family, teachers
and my community.
Editor’s Note: Way to go Austin! Your table top display is so well done, I think our
Chapter should borrow it for our next display opportunity.
For those who may not have
remembered to renew your membership,
this too can be completed online.
TSFC —
­ Chapter/Affiliate
President
Brenda Savilaakso
Vice President
Sherri Brayshaw-Spencer
Secretary
Barbara Greig
Treasurer
Lorne Perrin
Past President
Kathy Helbren
Info/Resource
Contact
Verna Perrin
Director
Patti Laurence
Director
Julie DeGroot
Director
Len Dalman
Member at Large Mike Koutis
“TS Movements”
The Tourette Syndrome Foundation of Canada –
Winnipeg Affiliate Newsletter is published three
to four times per year.
Address:
P.O. Box 49077
RPO Garden City
Winnipeg, Manitoba Canada R2V 4G8
Member at Large
Leanne Coleman-Kamphuis
Advisor
Gary Shady, Ph.D.
Advisor
Calvin Barbour,
Case Coordinator RPN
Information and Resource
Tel: 1-800-361-3120 ext 62
(Leave a message and your call will be returned)
Email: [email protected]
Web: tourette.ca
Facebook: facebook.com/tourette.winnipeg
TSFC – Winnipeg Affiliate (Serving Winnipeg and Surrounding Area) Charitable Registration #11926 7862 RR0001
TS MOVEMENTS
A TSFC – Winnipeg Affiliate Newsletter
JUNE 2014
Volume 17 – Issue #2
Page 2
CAN YOU SAY NEUROACANTHOCYTOSIS?
Tourette’s was ruled out as I did not have it growing up.
I was a medical mystery.
By: Mike Koutis
I posted this on Facebook and received so much support and
love from friends old and new...
At 36 I was a normal healthy and happy guy. I had a
rewarding career as a teacher, happily married with a house
and was looking forward to my future. Then out of nowhere
I began to make sounds with my throat. This was the
beginning of my problems. Over the next 3 years I started
to fidget and tic more and developed problems swallowing
my food and my speech became harder and harder to
understand. I don’t remember how many doctors I visited
and tests I did without results. Tourettes was ruled out as I
did not have it growing up. I was a medical mystery.
Fast forward 4 years later. I am divorced, not able to work,
on disability and living with my parents. I have been
diagnosed with a very rare degenerative disorder called
NEUROACANTHOCYTOSIS or NA for short. It’s honestly a
relief to know what I have.
After researching NA, I was astounded to read that I was
1 of only about 150 people in the world to have it. My
symptoms include vocal tics, biting of my tongue, extreme
fidgeting and weight loss as well as problems with my
speech, walking and swallowing. The hardest part was
having to tell my Mom and Dad about NA and that my
expected life span is 10-20 years.
People may find this hard to believe but I view my disorder
as a blessing. I now live life to the fullest and enjoy the
simple things like eating an amazing dessert and being able
to sit through a whole movie!! My life now has purpose
and meaning...to bring joy and happiness to all my friends
and family and make them smile.
Sure I have down days but because of all the love and
support of my friends and family I am usually smiling and
happy. I consider myself to be lucky. I’m not in pain (my
tongue biting has disappeared) and due to medication I am
not as fidgety and gaining back my weight. I can even sit
through a 3 hour movie!
My biggest concern is my eating, specifically my swallowing
problem. I make quite a mess when I eat but thanks to my
amazing Mom and all my new friends at the local
Boston Pizza I can go out and socialize. This is very
important to me and not something I take for granted.
I have joined an NA support group and become good
friends with people from all over the globe who have
been affected by this ugly disorder. Many of them
have brothers and husbands with NA who have it
worse than I...very little support and are either not
physically able to or too embarrassed to eat out in
public. How sad! I am truly blessed.
I am an average guy with a positive attitude and just
trying to educate all about NEUROACANTHOCYTOSIS.
SMILE AND LIVE!!!!!!
Editor’s Note: Mike reached out to our local Chapter
and has attended a number of our monthly meetings.
We are so pleased to have Mike participate and also
educate us and others about NA. Thanks Mike!
TS MOVEMENTS
A TSFC – Winnipeg Affiliate Newsletter
JUNE 2014
Volume 17 – Issue #2
Page 3
2014 CANADIAN POLICE CURLING
CHAMPIONSHIPS SUPPORTS TS
$7,500 raised in support of TSFC
By: Kevin Wilson & Bill Steward, Co Host Chairs
On behalf of the Winnipeg 2014 Canadian Police Curling Championships
Organizing Committee we would like to thank the participants, volunteers and
sponsors for making this year’s championships such a huge success. We have to
thank major sponsors St. Vital Curling Club for their wonderful on and off ice
amenities and Canad Inns Fort Garry for the ever popular hospitality room and
hotel accommodations. We are happy to announce that our Championships raised
$7,500 for our Charity of Choice -Tourette Syndrome Foundation of Canada. We
would like to congratulate Team British Columbia on their win. We wish Randy
Buchowski and the 2015 Organizing Committee much success and look forward
to seeing everyone once again in Sudbury.
Editor’s Note: On behalf of our local TSFC – Winnipeg Chapter, we thank the
2014 Canadian Police Curling Championships local organizing committee, the
association and all the curlers for including us in this event. From March 1522nd, 2014 we met great people and watched some great curling games. The
ongoing support by the Canadian Police Curling Association for the TSFC is most
appreciated. We thank our local TSFC Volunteers for assisting with this event and
showing the pride of our city.
TS MOVEMENTS
A TSFC – Winnipeg Affiliate Newsletter
JUNE 2014
Volume 17 – Issue #2
Page
Page 24
TALK TO THE DOC!
Once Diagnosed, what then?
By: Layna Penner, MD, FRCPC
Our son has been having tics
for some time. Last month, the
pediatrician met with my husband
and me to inform us that he has
diagnosed our son with Tourette’s
Disorder (but he did not tell our
son). I’m worried about telling
my son the diagnosis, because
I’m afraid it will make him feel
different or scared. How should we
handle this?
Receiving a new diagnosis of Tourette’s
Disorder can be challenging for
children and families. There are
many different types of families and
styles of parenting, and different ways
of handling information about the
diagnosis. The level of symptoms your
son is experiencing might affect how
much information you choose to share
initially.
There are advantages to sharing the
diagnosis. Many children with tics and
comorbid disorders (such as Attention
Deficit Hyperactivity Disorder) have
been blamed by themselves or others
for their symptoms, and they are often
relieved to have a diagnosis. Being
aware of the diagnosis will allow
This newsletter was produced for the Tourette
Syndrome Foundation of Canada – Winnipeg
Chapter. Anyone wishing to make suggestion
or comments about the content or if you would
like to contribute an article of inclusion to the
newsletter, please contact us at:
Email:
Phone:
[email protected]
1-800-361-3120 ext 62
Design of this newsletter was donated by ClarkHuot
children to provide an explanation if
others comment on their symptoms.
Children may worry that they have a
condition worse than a tic disorder,
particularly if they have a partial
awareness of the situation due to
overhearing adult conversations,
or noticing upcoming medical
appointments on the calendar. At a
certain level of maturity, physicians are
expected to share the diagnosis with
children and youth for ethical reasons,
as it is felt that children have the right
to information about their health.
It is important to consider the age and
developmental level of the child when
deciding what to tell children. Younger
children require less information
and fewer details. A very simple
explanation, for instance that tics are
movements and sounds that people
do not mean to make, is often helpful.
With very young children, sharing the
diagnosis is actually a process, since
limited information is provided initially,
but we share more information with
them as they mature. Teenagers might
prefer a more complex discussion
right away. Older children may have
The information provided on a particular
medication and/or treatment is individual.
Opinions expressed in the material printed in
this publication represent the opinions of the
author and are not necessarily endorsed by the
Foundation, nor does acceptance of advertising
for products or service in any way constitute
endorsement by the Foundation. Every effort has
been made to locate the copyright owners of
the material quoted in text. Omissions brought
to our attention will be credited in a subsequent
printing. Grateful acknowledgement is made
to those publishers/authors who asked that
their ownership be noted. Photos used in this
publication are for illustrative purposes only.
preconceived ideas or stereotypes
about Tourette’s Disorder that will need
to be addressed.
A discussion about diagnosis should
take place when everyone is calm
and comfortable. When you are
discussing the diagnosis with your
child, it is important to be aware of
your own emotional state. Sometimes
parents are more distressed about the
condition than the child! Children
often look to their parents for cues
about how to handle new information.
We do not want adults to give children
the message that Tourette’s Disorder
is shameful and frightening, either
through words or body language.
However, it is very important for you to
have the opportunity to openly share
your concerns and feelings about your
son’s condition with other supportive
adults.
Children react in different ways to the
diagnosis –many are relieved to have
an explanation for their behaviors,
some become sad, others worried,
and some are quite nonchalant.
It is important to accept these
different reactions. After your initial
conversation about the diagnosis, offer
to answer questions at a later time.
Try to check out your son’s knowledge
of the condition and his concerns, so
you can provide the information that
is most relevant for him. Many people
have a very pessimistic view of
Tourette’s Disorder and it may be
helpful to share some recent research
findings – that most children with
Tourette’s experience improvement
over time, and that both therapy and
medication are helpful for difficult
TS MOVEMENTS
A TSFC – Winnipeg Affiliate Newsletter
JUNE 2014
Volume 17 – Issue #2
Page
Page 3
5
symptoms. There are also some
great resources for families, including
recommended websites and age
appropriate books, which may help
with providing information to your son.
I’ve heard there is a new
medication available for Tourette’s
Disorder. I’m currently on
clonidine, which is helpful, but
taking clonidine three times daily is
inconvenient.
In 2013, the medication guanfacine
(brand name- Intuniv XR) was released
in Canada. Although Health Canada
has only approved this medication for
the treatment of ADHD in children age
6 – 12 years, guanfacine is generally
considered a safe and effective
treatment for Tourette’s Disorder in
adults and children. This medication
has been available for years in the U.S.,
so it is not really a new medication.
Guanfacine and clonidine both belong
to a group of medications called
alpha-adrenergic receptor agonists
(alpha agonists, for short). These
medications were initially released for
use as high blood pressure medications
in larger doses. Clonidine has been
used since the 1970’s for Tourette’s
Disorder. It is thought that these
medications improve tics by reducing
the level of the chemical transmitters
norepinephrine and dopamine in the
brain. Guanfacine XR is long-acting,
and only needs to be taken once daily,
compared to the multiple daily doses
required when taking clonidine.
In 2012, Canadian guidelines for the
treatment of Tourette’s Disorder were
published by the Tourette Syndrome
Foundation of Canada (TSFC).
These guidelines were based on a
comprehensive review of all studies
of treatment in Tourette’s Disorder.
According to these guidelines,
the initial or first-line treatments
recommended for Tourette’s Disorder
are behavioral therapy and alpha
agonist medications (either clonidine
or guanfacine). Other medications are
only recommended after the first-line
treatments have been tried. Secondline choices include risperidone and
aripiprazole. Third-line medication
recommendations include older
medications such as haloperidol and
pimozide.
Guanfacine, like all tic medications,
controls Tourette’s Disorder symptoms
by reducing tic frequency and
severity, but does not “cure” tics.
Guanfacine also improves ADHD
symptoms, particularly impulsivity and
hyperactivity.
Side effects reported with guanfacine
include sedation, although this often
improves as people remain on the
medication. Mild effects on the
cardiovascular system (particularly
lower blood pressure and heart rate)
have been reported. This medication
has interactions with certain other
medications, as well as with grapefruit
juice. The manufacturer recommends
guanfacine XR should not be taken
with a high fat meal. Appetite, weight
and growth effects have not been
observed with this class of medication.
Layna Penner, MD, FRCPC
Child and Adolescent Psychiatrist
Tourette Syndrome Service
VOLUNTEERS
NEEDED!
The TSFC – Winnipeg
Chapter seeks your help!
We are always in need of
volunteers to help man
our display board at one/two
day conferences throughout
the year. We can always use
a NEW and fresh newsletter
EDITOR, etc.
IF YOU ARE INTERESTED
call us at:
1-800-361-3120 ext 62
& leave a message
for a call back.
CHAPTER MEETINGS
Our TSFC – Winnipeg Chapter meets
on the 3rd Wednesday of the month
(except July & August) and is open
to all interested parties. At these
meetings our local representatives
review business matters, discuss local
event plans, including the operation
of our local Trek for Tourette held
annually in March. Meetings are held
at the Community Services Building
of MATC at 228 Maryland (on the
southwest corner of Broadway and
Maryland) from 7 - 9 pm.
Call for further info
1-800-361-3120 ext 62
TS MOVEMENTS
A TSFC – Winnipeg Affiliate Newsletter
JUNE 2014
Volume 17 – Issue #2
Page 6
ANNUAL TREK
FOR TOURETTE
$160,000 raised across Canada
By: Editor
The 6th Annual Trek for Tourette (March 30, 2014)
is now behind us and was very successful raising
some $160,000 from Treks conducted across Canada.
Our local TSFC – Winnipeg Chapter coordinators,
Julie DeGroot & Sherri Brayshaw-Spencer, extend
thanks to all who participated, pledged, supported,
and volunteered to make this year’s event another
success. Be sure to mark your calendars for the
7th Annual Trek for Tourette to be held on Sunday,
March 29th, 2015.
2014 NATIONAL CONFERENCE
ON TS PLUS
“Great opportunity for parents of new diagnosed. Great Wealth of
information & knowledge”
By: Editor
The 2014 National Conference on Tourette Syndrome PLUS will be held in Vancouver, BC from
Thursday, October 23rd to Saturday, October 25th at the Renaissance Vancouver Harbourside Hotel.
Be sure to check the national website for full updates on speakers and programs at: www.tourette.ca
BASEBALL WITH THE
GOLDEYES
Join us on July 21st, Monday at 7pm
By: Editor
The Goldeyes Baseball Club has offered us a limited number of “complimentary” tickets to
their game on July 21st, 2014 at 7pm at Shaw Park. As we have a limited number of tickets, it
will be a first come first served basis for tickets. If you are interested in attending, contact us
at: Email: [email protected]
So don’t delay, contact us today! Further information can be found on our Facebook page at:
www.facebook.com/TouretteWinnipeg