Tourette
Syndrome Life Stories
Story No.'s 16-21
 This
section of our site contains the true
life stories (see below) of
people with Tourette Syndrome and/or their loved
ones. We have placed several stories on each
page. You will find links to other life
story pages in the left-side menu bar.
Tourette-Syndrome.com encourages you to write
and send us your personal story -- reflecting
the ups and downs of you or a loved one's life
with Tourette Syndrome. If
you want to share your personal story
about Tourette Syndrome, ADD, ADHD or OCD, or
the story of someone you love who has one or
more of these disorders, please
fill out this form.
Stories
on this Page
Story
No. 16
Mother
Seeks Help and Advice for Her TS Son -- Now in
Prison for Child Molestation
Unlike most
families with children that have T.S., my son's
story is a little different. He started out as a
very sick infant: severe ear infections, failure
to thrive, congenital heart problems. We had
another child pass away when my son was 6 yrs.
old. We thought the tics were from stress of
losing his little brother. By the time he was 8
we knew it was T.S.
I am a nurse and
noticed his facial grimaces, his being unable to
walk without hopping, his learning disabilities
and speech problems getting worse. To add to all
of this, his father left, I had to go to work
full time, we moved, and the school felt he was
"not behind enough" for special ed. By
the time my son was in Jr. High , the school
finally put him in resource classes. He began to
be very angry, not telling me about things that
bothered him. I felt this was due to all
the changes we had gone through.
A neighbor
complained that my son pulled down his son's
pants. I talked with him, he denied it. We got
counseling and nothing more was mentioned. He
graduated H.S., he was working a job, and
thought, was doing well. He was arrested for
"molesting" his half-brother. We had
him examined by a psychologist who informed us
that my son's I.Q. was that of a 14 yr. old, and
that he saw no signs of him being a child
molester.
He was given
probation, we moved, he was working again, and
thought he was okay. He was arrested again for
pulling down a little boys' pants. No-one ever
mentioned that this conduct was related to his
T.S. Every book I read never mentioned this side
of T.S.
He was examined
by a Dr. at City of Hope and that is when we
found out that this could be treated with
medicine. The Public Defender refused to enter
this letter and information as part of my son's
defense. He told us that the jury would only see
him as more of a menace to society because of
this. He was sentenced to 17 yrs. in a state
prison! Both the judge and P.A.
recommended that he be placed in a state mental
facility for treatment but the CDC did not
agree.
He is currently
serving time in a hard-core prison, "in the
hole" for his own protection. He cries
inconsolably, wonders when he can come home, and
asks " when are they going to realize that
I don't belong here?" I am disabled, unable
to travel the 326 mi. one way to see him, but I
promised I would never give up trying to help
him get the help he needs.
My question is
"Why has this never been mentioned in any
books, or counseling, or by our own neurologist
as being a part of T.S.? I was told that only
about 15 % of all T.S. patients exhibit this
behavior. How many parents are unaware that this
could happen to their child? My fight has been
gong on a long time. My son is now 23 yrs. old,
thinks like a 14 yr. old, and now faces more
suffering than humanly possible!
If we had been
aware of this side of T.S., maybe we could have
been more alert to the signs, the symptoms, to
watch for. If anyone has any suggestions as to
how to help my son, or who to call, please
e-mail me at: ljh2214@gte.net.
The more information we can get on this subject,
the more we can prevent this from ever happening
to someone else's
child. Only my faith in God is seeing me through
this and I am growing weary.
God Bless You.
LJH
Story
No. 17
Father
Describes Daughter's Verbal Tics and Discovery
of TS
I am the father
of three children. My oldest, a girl who
is about to turn 8 was just diagnosed with
Tourette's Syndrome with Attention Deficit
Disorder Syndrome and Depression
complications. Tina, as she likes to call
herself, looks like a normal healthy
7-year-old girl. She is very
pleasant and likeable. She has many
friends and people who love her.
As a toddler Tina began demonstrating odd
behavior - doing strange things like
stacking a deck of playing cards one on top of
another over and over and over again all
day long as if obsessed with having to do
this.
Later on she
began licking her lips so frequently that they
would always be chapped badly. This
progressed to obsessive hand washing and
peculiar rituals at bedtime where she had
to have a certain number of toys in her bed
before she would go to sleep - and often sobbing
herself to sleep. Eventually we
began to notice she would repeat phrases (Verbal
Tics) "I touched my
butt." "I put my tongue through
my teeth." She would echo
some phrases. "Sorry
Sorry" "Excuse me... Excuse
me", or perform an evening up ritual
on some phrases. "I like horses... No, I
don't like horses."
These sound
harmless enough, but we would hear these phrases
a hundred times a day or more. We
became aggravated with her and this weird
behavior. But when we tried to
discipline her and make her quit doing these
things it only added to the frequency and
severity of her behavior. We
began consulting with her teacher at school who
also noticed this peculiar behavior.
Tina was having
trouble learning. She couldn't pay
attention or stay focused. She was not
making progress in reading, and
math... The teacher said Tina
always tried hard to learn, but was not
making normal progress. Tina was placed in
remedial reading; one-on-one with a really
wonderful reading teacher. At the last
parent teacher conference of the
year, her mother and I proposed that she repeat
the first grade over again, much to the
teachers approval.
During Tina' s
second attempt at first grade she made
remarkable progress in reading (Which we credit
to a special bond and friendship that she and
her reading teacher had formed the year
before.) We had met several times with
Tina's Teachers, the Principal, the school
Psychologist. We began to discuss the
strange behaviors and learning problems and try
to come up with a plan to find out what to
do. We decided to see a Child
Psychiatrist. He diagnosed her with
depression and recommended medication,
none of which were effective, and only made her
feel ill.
As time went on
we noticed the onset of (Motor
Tics.) Her arms and legs would
jerk wildly - out of the blue - like she had an
electric shock or something. Later
her eye started blinking out of sequence with
the other one. One day my younger sister,
who is studying to become a Physician,
came to visit. She had spent years working
for a medical research company and she had
published a paper on certain neurological
issues. She got to see first-hand
some of the behavior and facial tics that Tina
was exhibiting. She
recommended that we have Tina screened for
Tourette's Syndrome.
We scheduled an
appointment with a Child
Neurologist. He diagnosed her
with Tourette's Syndrome. He explained
that it may disappear in adulthood, but it
would probably get worse before it got
better. If it did there were
medications, but with ADDS it would be tricky to
find the right one. If she took a
medication to stop the tics it would increase
the symptoms of ADDS and
vise-versa.
Since then we
have become more educated on how to deal
with Tourette's and Tina's teachers have
adopted strategies to help her in
the classroom. I can't say
that all our problems are over, but Tina has
improved dramatically in school as a
result of more one-on-one teaching and
more structured activities. At
home her behavior has become less annoying as a
result of having identified her condition
and understanding that she has no more control
over
her tics than I have control over a
hiccup. In fact I find it rather
fascinating.
I don't know if
she really understands all of this
yet. So far, her friends don't
seem to mind, but as the innocence and
acceptance of youth wear off, I'm afraid
she may have to cope with some ridicule from her
peers later on down the road. Well,
we just plan to take it one day at a time and
give her all the love she deserves.
Best wishes to all of you.
Tina's father.
Story
No. 18
Mother
Describes How Acupuncture Has Relieved Her
11-Year Old Son's Tourette's Tics
Hello,
My name is Janet
and my son is Andy. Andy is 11 years old
and began having symptoms when he was 6.
Within ten minutes of first hearing the
obviously involuntary whoops coming out of his
mouth, I knew he had a neurological
disorder. I couldn't quite put the name
Tourette's to it until about 3 days later.
But the first thing I did when I heard the
noises was to call his teacher and ask if she
heard anything. She said she had and asked
him to stop. I told her immediately
that I didn't know what it was, but that I was
sure it was involuntary and asked her to please
not chastise or punish him in any way and to
basically ignore it until I found out what was
going on. (In retrospect, this was the
absolute best thing that I could have done, and
saved my son from ridicule and punishment from
the outset.)
I
immediately did two things, first, I
called the pediatrician who, after seeing him,
said it was an allergy and sent me to an
allergist who also said it was an allergy,
and second, when I put the name to what I
thought it was, looked in the phone book
under Tourette's Syndrome and asked the person
who answered which doctor in L.A. was the
expert in Tourette's. I was referred to
Dr. Comings at City of Hope where I had to wait
2 months for an appointment, but once there,
Andy was diagnosed with a very benign but
textbook case of Tourette's (although the
absolute diagnosis can only be made after
symptoms last one year.)
The Doctor
offered the Clonidine patch as the treatment and
we tried that for a couple of months.
Basically, it made Andy very groggy and I took
him off when one day, he was sitting on the
toilet and literally fell off because he was so
woozy. In my quest to assure myself of the
correct diagnosis I also visited a neurologist
who did an MRI at my request to rule out
anything else, but the treatment options were
the same. Since Andy still had tics
with the Clonidine, I decided to try other
treatment options.
The first thing we tried was Homeopathy. I
was referred to someone who primarily practiced
in Santa Barbara, California , but who was in LA
a couple of times a month. She gave
him a homeopathic remedy which he stayed on for
most of 5 years. His tics waxed and waned
they went from noises to head jerks to tapping
to knee bending to squinting ,
snorting, coprolalia, echolalia etc. etc.
It eventually settled into low grade
vocalizations.
At some point, we
also tried biofeedback which the clinicians
thought would surely eliminate some of the
tics. After about 8 weeks he showed no
improvement and we decided to stick with the
homeopathy. Other than the physical
discomfort that some of the tics caused, Andy
has never been bothered by his tics.
Everyone around him has been totally supportive.
He is smart intelligent, and very popular and
extremely well liked by boys and
girls.
His grandparents
and teachers and sister have
always been supportive. He never likes to
say specifically what he has, when people ask he
just ignores them and goes on with life.
That's been his way of dealing with it, and I
have learned to be supportive of that
course. When people ask me though, I tell
them what it is although I always inform
teachers, camps,. etc. ahead of time.
Luckily Andy doesn't have ADD or ADHD which
would be much harder to cope with.
Sometime this year while he was 11 and
continuing on homeopathy, his symptoms,
specifically his vocalizations, got really
pronounced. After informing the
homeopathic doctor and adjusting his remedy over
a period of 3-4 months the tics were still very
loud and bothersome to teachers, although
neither he nor his friends complained. I
must admit, it was really bothering me and I
became very worried about what effect this was
having on Andy at school, since the Middle
School teachers were not nearly as sympathetic
or flexible as in elementary school. The
teachers began to see him as his
symptom instead of for himself.
I began to think about going back to a
neurologist, searching the internet for
new drug treatments, but I couldn't quite
settle on what exactly my next step
was. A friend, who was
aware of the increase in symptoms, suggested I
see an acupuncturist whom he knew was very good
with kids and neurological diseases. I
called him immediately and discussed Andy's
situation. He told me that he hadn't
treated Tourette's before but that he had an
article in one of his files of a clinical study
done in China on the use of Acupuncture in kids
with Tourette's. After faxing it to me we
discussed a treatment plan.
It seemed like a
no brainer. What was there to lose?
I could always go the drug route if this didn't
work. I stopped the homeopathic remedy to
try the acupuncture. The plan was twice a week
for three weeks and then reevaluate. After
a couple of weeks, I noticed about a ten percent
improvement. Then we went to once a
week for three weeks, there was about
another 10 percent improvement. Then every
two weeks, and now every three weeks.
Although Andy still has some facial and vocal
tics, they are hardly noticeable. I am so
pleased that, for now, this is working quite
well. I am well aware that the tics may
change or get worse tomorrow, but I would have
no hesitation of going the Acupuncture
route first. I highly recommend
acupuncture based on my experience. I am
more than happy to share the name of my doctor
if anyone wants to know. Again. I hope
this helps someone.
Janet.
Story
19
Mother
Seeks Help for TS Son in Arizona, Husband Files
Divorce Papers
My son's name is
JT. He was dx with TS,OCD,ADHD, and
learning disabilities since he was 8 years
old. He was then tried on numerous med at
the Michael Reese hospital in Chicago ILL. (not
as an inpatient). The med which
worked the best at that time was Imipramine
generic for Tofranil. He was then placed
on 50mgs and stay that way for 4 years when they
found he had a mitro valve prolasp and also had
to be put on 50mgs of Atenonol.
Things were going
pretty well we then moved to WI. where I
remarried to someone JT and I had been with for
9 years and had been there when JT was dx.
From 91 to 96 we were active in the TS support
group and things were good as could be
expected. Heard other stories as TS kids
were having rage and anger but just could not
see that with my son.
When he turned 17
in his junior year things changed the rage
and anger came out and he needed to be
hospitalized. Meds were checked and
changed and things have been a nightmare or
roller coaster ever since. We are
currently in AZ, which I came out here to
get a second opinion at Mayo and my husband
served me my divorce papers. My family is
all out here so here we are.
Now my son has
gone through 3 hospital stays in AZ. all kinds
of meds and his dx is still the same. He
is currently on Mellaril, Lithium,
Seroquel,Celexa, Atenonol, and also med for
thyroid. He is now in the hospital in
Phoenix. The new meds are being watched
closely. My story is a sad one but I don't
end here I will never give up on my son and I
will keep fighting the system and whoever else
it takes to help him and others.
These kids and
teens and adults need to know they are loved and
they have someone behind them. My son is
fighting for his life just like a diabetic or
cancer patient is doing and the world needs to
reach out to them. Thank you for letting
me share my story!
Sandi
Story
No. 20
Couple
Adopts 8-Year Old Son and Daughter . . . Now
Finds Son Has Tourette's 2 Years Later
My son is 10 years old. My husband and I
adopted him and his sister when he was 8 years
old. A few months after the children moved
in, we noticed he was humming under his breath -
not a tune but just a noise. When he was
asked to
stop, he would, but then it would start up again
right away. I started noticing that he was
doing it when he concentrated on something or
when he was just sitting there.
We weren't overly
concerned, we just thought that he would stop
eventually. It did fade, but it was
replaced by a neck twitch and several facial
tics. We asked if his neck hurt and he
said it didn't. It seemed to come more
often when he was concentrating. We took
him to the doctor to see if anything was wrong
and we were referred to a specialist. We
had that appointment today and he has been
diagnosed with a "mild" case of
Tourette Syndrome.
I would like to
learn more about it. We are not starting
medication because there seems to be no teasing
from classmates and his grades are improving
since being adopted. We are very
proud of him and hope that this disorder will
not get in his way. I have no idea
of what struggles lie ahead - but we will meet
them head on and do the very best we can.
ADW in Texas
Story
No. 21
Canadian
Couple Finds "Nutraceutical" Dietary
Supplement Treatment Works Wonders in Curbing
Their Son's Tourette Symptoms
It is my hope
that in reading our story, you will see that
there may be another option out there that could
help your family as much as it has ours.
Our son Everett,
now almost 15, was diagnosed with TS nearing the
end of Grade 1, after almost a year of seeing
different doctors. We were fortunate to find out
earlier than some parents do that there was a
reason for the tantrums, eye blinking, rigid
thinking, defiance, oppositional behavior, and
disinhibition.
Everett was difficult right from the start. He
was often a cranky baby, and we thought it might
be colic. My Dad used to joke with me that he
was glad that I was having my turn because I
used to keep him up at night so much. Before age
2, Everett used to wake up at least once a week
at 2-3 AM with night terrors, eyes wide open
with fear yet not responsive to our best efforts
to console him. It was also about that time that
we noticed him squeezing his eyes shut tightly
while watching TV. We learned that the big,
noisy birthday parties did not work. As he got
older, we began to "walk on eggshells"
for fear of triggering his next tantrum.
I used to blame my wife, Jude, for not knowing
how to handle him. She wound up going for
counseling through a group called Adult Children
of Alcoholics (ACOA), believing that there must
be something wrong with her because her
mother divorced her alcoholic father when she
was 7 or 8. We went to counseling together
(reluctantly for me) and took various
parenting courses, hoping that we would find
just the right technique that would work to
control our son. None of it helped
consistently. Chairing and consequences
meant nothing to him...he was going to have his
way and that was that. Being a firefighter
required that I work shifts so keeping a steady
routine was challenging. Luckily we did okay
on one income because we decided that Jude would
be a full time Mom.
Everett has a sister, Morgen, now nearing 14.
When she was not yet eighteen months old, she
was so stressed out from her brother's tantrums
that she became so constipated she had to be
rushed to the hospital late one night. We had to
be very careful not to leave Everett unattended
near his sister. He pushed her down the stairs
once and thought it was
great fun to hold her head under the water in
the bath. Even as they got older -
7,8,9,10 - we didn't go out much because Everett
was too much for most baby-sitters to handle.
There was laughing and playing too. It felt like
my heart was ripped out though when, in what
seemed like a split second, we weren't having
fun anymore. Something would set him off and we
had to switch to tantrum survival mode. It was
like the fun never really happened.
So, when I came
home from work the day Jude had taken Everett to
see a specialist, I was stunned at the
announcement that there was "something
wrong" with my son. Tourette Syndrome? What
do you mean Tourette Syndrome? What the hell is
that?
That was near the
end of Grade 1. That was when we were told that
we should put Everett on these drugs. No way, I
thought. No drugs. We put him on the drugs. Of
course the doctor was very reassuring that the
long term effects would be okay. By that time we
were pretty much wrecked and put our trust in
the doctor.
To make a long story shorter, Everett was on
various medications for 5 years; they all had
side effects. The tics were not major. The
behaviors were. From 10 years to 12 years old he
was on Haldol and Prozac. He had the moon face
and had gained a tremendous amount of weight.
Haldol can sometimes cause enlarged breasts in
males; by 12, this was happening to Everett. The
tantrums were as bad as ever. He had become more
physical as he grew bigger; he punched his Mom
in the face while driving in the car because of
a change in plans. We were now dragging him to a
time out room, as suggested by the hospital
staff, and locking him behind a solid core door
until he just played himself out from the
tantrum.
There were
various holes in our walls, one large one from
me (Jude had told me that I couldn't be angry
with him, he can't help it. I knew she was
right, but I yelled that I could be angry if
that was how I felt and I bashed a hole in the
wall). We had reached the end of our rope. One
Sunday night after a lousy week-end, I fought to
get him in the car and took Everett to my
parents. He lived there for the next 6 months
for the remainder of Grade 6. We felt awful
about it. We knew we had to do something and we
had to get him off the drugs. We were seriously
thinking about selling our home so that we could
afford a boarding school, even though we knew
that probably wouldn't be the best for him.
It was at that point that friends told us about
something called nutraceuticals. We hadn't ever
heard of such a thing. The idea of nutrition was
something that we did our best to pay attention
to by limiting the candy, food dyes, artificial
flavors etc. but we hadn't used any food
supplements. We started Everett on 3 products:
glyconutrients, phytonutrients, and something to
support the hormone system. This is not like a
vitamin or mineral, or amino acid.
After two months, while Everett still lived at
his grandparents (he would come home on
week-ends but most times he had to go back early
because everything that he was holding in all
week came out with abuse towards us and his
sister), he had been receiving these
nutraceutical products consistently 3x each
day. The amount of Haldol and Prozac was
reduced to zero. We made that decision on our
own and are not recommending that this is what
others should do. It was after two months of
tough love and dietary supplements and a change
of environment ( it was important to break the
dance we in) that we began to see what we
thought was real improvement.
Everett was home for the week-end. There was a
confrontation developing between Everett and
Morgen ; his behavior required a time-out. He
was told to go to his bedroom until he could
behave with more respect for us. He yelled and
swore at us but he went on his own and he did
not have to be locked in the time-out room. The
amazing part is that he came back after only 10
minutes, very calm, apologetic for his behavior,
and he told us WHY he was getting upset with his
sister. That was a first. We used to go from
tantrum to tantrum without being able to talk to
him about what was bothering him. Several times
we had asked his doctor to talk to him alone to
find out how he was feeling.
He would not, or
could not, tell us what or how he felt after
these blowups. We knew that he was hurting and
in fact had been talking about killing himself.
Jude and I just felt such a relief when he
started talking to us that day. His doctor had
even told us that we might have been expecting
too much from him to think that he could relate
how he feels after a tantrum or to remember what
started it. He told us that we had to remember
that with Tourette's, he feels foggy afterward
and can't remember the why.
Now, 3 years on nutraceuticals and completely
off prescription drugs, Everett handles himself
exceptionally well. He still has Tourette's and
can at times be obnoxious, but what teenager
isn't? He still needs to work on keeping
himself organized. He told me a while ago when I
asked him, on a scale of 1-10, where are things
at for you now. He said that where things were
often at 10, the worst, most of the time it is a
1 now. He is doing well at school, (math could
be better) is well liked by teachers and
classmates, and has lost all the weight he had
gained from the years of drugs (this actually
took only four months. We were tucking him in
one night - at home!- about two weeks into Grade
7. He volunteered out of the blue that "the
kids at school are not calling me fat
anymore". "See," he said, pulling
the covers down, "I don't have a pot belly
anymore!". This was a wet eye moment for
us. He had never told us before that he was
teased at school about the weight.). He is
happy and feels good about himself most of the
time. Now we have reasoning, compromise, and for
the most part compliance, where it just didn't
happen before.
We have not taken Everett to his former doctor
during the last three years because there has
been no need to. Jude and I did however return
to tell him about the change in our life, and
what we were doing differently. We felt that he
needed to know about it so that he could
consider how it might help others.
Unfortunately, this particular doctor dismissed
our claim that Everett had improved because of
our new approach. He said he
believed that Everett had improved because our
"family dynamics" had changed.
"There is no evidence that nutrition and
especially dietary supplements do
anything", he said. Hey, family dynamics
was not the reason why Everett's behavior
changed in two months. It was not because we had
become better parents. And it wasn't a placebo
effect either. In November 97, we stopped giving
Everett the supplements. We thought it would be
an interesting experiment. It took 5 days
for the old behaviors to return.
I would love to just out and say the name of the
company and exactly what Everett uses now
instead of drugs, but, because of the way
the laws read for dietary supplements that would
be close to making a drug claim and the company
does not allow me to do that. If someone would
like to contact Jude or myself privately to find
out what has changed our life that would be
different. Please contact us. Others need
to know that there is something else that may
help their family.
I would love to talk to a doctor out there who
would be open to considering a study examining
the effect of nutraceutical dietary
supplements for Tourette Syndrome. There is
already a peer reviewed study published re:
ADHD. This could be done through a Chapter of
the TS Foundation so that there are enough
individuals to make an acceptable study.
Dwight Wells, Edmonton, Alberta
Ph.(780) 484-0783 Fax (780)413-9149
E-mail: <glycotek@telusplanet.net>
Why
Not Submit Your Article to
Tourette Syndrome Online by email now?
Help
children and adults with Tourette Syndrome, ADHD
and OCD by regularly monitoring this site to
answer questions, contribute information, and
provide support to those having difficulty
coping with these disorders and conditions.
Spread
the word to others about Tourette-Syndrome.com
Send them a short Recommend-It
message now!
|
