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John's
Tourette Syndrome Story
Hello,
My
name is Craig Whitley and I am the father of a
Tourette Syndrome child. My 17-year old son John
has had Tourette symptoms since the age of
eight. John, like most Tourette patients, is a
very bright child and has a high I.Q. He is very
creative and has the heart of a lion. Most
importantly, John is one of the most loving
people I have ever met or known.
Prior to the on-set of Tourette Syndrome motor
tics at the age of 8, John made A's and B's in
every subject and showed few signs of ADD or
ADHD. Although John's tics have been
diagnosed as "mild" for a Tourette's
patient, the associated attention deficit
problems and hyperactivity that often
accompanies Tourette's has made school very
difficult for John -- and his grades have
suffered. John has encountered numerous tics
over the past 5 years and often displays them in
sequential fashion.
When John was
much younger he was sometimes teased and made
fun of by his peers. However, John's
outgoing personality, optimism, creativity and
positive mental attitude prevented much of the
embarrassment many children with Tourette
Syndrome feel when being teased, picked-on or
avoided by classmates and peer groups. John has
never had a problem in telling friends and new
acquaintances that he has Tourette
Syndrome.
When John was
young he would come home from school and say,
"Daddy, a boy in my class picked on me
today because I was ticcing and I just told him
I couldn't help it because I had Tourette
Syndrome. You know Dad that's a real big
word and they think my vocabulary is better than
theirs. They don't won't me to know that they
don't know what this big long word really means,
so they just say "Okay, I'm sorry" and
then that's the end -- they stop picking on
me."
So as you can
see, John had no special way to convey to others
he had Tourette Syndrome. He simply dealt
with it head-on and for that reason, Tourette
Syndrome has not caused him to be reclusive or
suffer emotionally. Instead, the pain John
feels most comes from not being able to perform
up to his academic potential. This is not the
result of Tourette Syndrome, but instead the
ADHD that accompanies John's Tourette's.
It is very frustrating for a child, regardless
of age, to know he has far greater potential
than he is capable of delivering.
Perhaps one
reason John has handled his Tourette's so well
is because he is considered a mild case.
After moving on from eye-blinking and
lip-licking for the first three years after he
began to display classic Tourette Syndrome
symptoms, John moved on to sequential tics that
varied in both frequency and type of
tics.
For the past few
years his normal tics include: squinting
his eyes, rubbing his nose with his right thumb
and forefinger, then taking the same thumb and
forefinger to pull down his lower eyelids
several times, grabbing his chin with his left
hand and the top of his head with his right hand
to twist and pop his neck, then twisting his
arms to pop his elbows or shoulders while his
arms hang by his side, and lastly twisting his
ankles until they pop. I have listed
each of these tics in the same sequential order
and routine that he runs through every few
minutes if he is under stress, worried or bored,
less frequently otherwise.
John has tried
several medication's for his tics and
ADHD. At times all have seemed to help for
a few weeks. His tics are much less
frequent when he is on medication. He
currently takes Orap, Adderall, and Luvox, but
has also taken both Clonidine and Dexadrine in
the past.
As a parent of a
Tourette child, you want the best medical
treatment that money can buy for your son or
daughter. But the medications that
Tourette, ADHD, ADD and OCD children have to
take are potent and the side effects can
sometimes be of greater concern than the
symptoms a physician is trying to control.
For example, after being taken off of Dexadrine
(for his ADHD), my son John encountered a very
dramatic weight gain over a six-month
period. The weight gain resulted in a
dramatic drop in John's self-esteem and periodic
signs of depression once he found how hard it is
to lose weight.
This experience
has proven to me that despite the good benefits
thousands of Tourette patients obtain with
medication, we must all weigh the risk and
reward that comes with medication --
particularly when tics are mild and the child is
well-adjusted and maintains a positive mental
attitude despite any adversities caused by his
or her conditions. Keep in mind that other
than the recently released nicotine patch, no
medication has ever been invented specifically
for Tourette Syndrome. Instead, the drugs
generally used to treat Tourette Syndrome are
very potent pharmaceuticals originally invented
to treat serious diseases like high blood
pressure, depression, etc. It is extremely
important to know what drugs your son or
daughter is taking for Tourette's, what side
effects you need to be concerned about or on the
lookout for and what risks are involved if the
drug regiment is not followed properly.
John and I hope
that this web site can be a glimmer of hope and
oasis of love as you search for answers for
yourself or a loved one. This website is
just our small way of helping others. I
will try to answer all questions as best as
possible, but I am merely a parent and not a
medical professional. Please help John and
I make Tourette-Syndrome.com the preeminent
information source and online
"community" for people coping with or
interested in this neurological
disorder.
If you run across
good information or have another web site about
Tourette's, ADHD, ADD or OCD that you like --
forward us the link, or send us your personal
story. Be sure and help contribute
to our Tourette Syndrome Scholarship Program
(this is to help others, not John for he is
excluded) by buying from our sponsors, shopping
in our Go2eMall.com
stores or sending us your contribution.
Sincerely,
Craig Whitley
A Concerned Parent of a Tourette Syndrome
Child
P.S. My personal
story about how I have lived with ADD is
also on this site.
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