Tourette Syndrome - Now What? Guestbook1
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TSNW - TSNowWhat - TouretteNowWhat - Tourette
Syndrome Now What?
I am a single parent of a 5 year old boy who i think has the syndrome
i'm very frustrated about all these things .I've read your Page and it
is very comforting. Please help me learn more about the Tourett Syndrome.
Thank you very much
Rommel Soriano <firstname.lastname@example.org>
Daly City, CA USA - Wednesday, September 20, 2000 at 17:38:04 (PDT)
Hi! just visited your site, I think it is has a wealth of information,
and support advice. Love it. My husband and daughter of seven...both have
Tourette Syndrome, We are 99% certain although they are of yet undiagnosed...but
we are in that process at the moment. If anyone can offer me advice it
would be great. Red Irish. x
Red Irish <email@example.com>
Scotland - Wednesday, September 20, 2000 at 05:44:59 (PDT)
This was interesting. I have a 10 year old son with Tourettes, OCD
and ADHD. He is extremely oppositional. He has a hard time doing schoolwork
and he has a hard time socially. We have tried almost every drug there
is and we are still looking. If anyone has any suggestions, please e-mail
Cleveland, oh USA - Tuesday, September 19, 2000 at 20:23:27 (PDT)
Looks good. I like this website. It has alot of info on TS. We need
more sites like this,
Manchester, NH USA - Tuesday, September 19, 2000 at 15:17:01 (PDT)
My daughter has not been diagnosed with the condition yet but she
has the classic symptoms. Ive taken her to the doctor and he has told me
only that she will grow out of it. It's been 3 years now and she still
suffers from the same symptoms, but they have gotten worse. Im so glad
i finally found your web site so that i can understand what is wrong with
my daughter and not have to go through the hell of missunderstanding any
Julie Carson <firstname.lastname@example.org>
Sandy, Ut. USA - Sunday, September 17, 2000 at 17:47:55 (PDT)
I love this sight but I need help asking a question. My e-mail is
email@example.com can somebody please e-mail me. My son is 7 and the doctor
just told me he has ts through my talking with him. I just need advise.
I love this sight. This is the only one I have been to.
NY USA - Saturday, September 16, 2000 at 05:51:18 (PDT)
Do people/childeren get social security medical coverage with this
Laurie Snyder <LLsny@yahoo.com>
irrigon , oregon USA - Thursday, September 14, 2000 at 13:28:58 (PDT)
My 8 year old son was digagnosed with TS this week. It feels good
to finally get a name for this. I have known for two years that he has
it but I never could get anyone to name it. I feel bad for him because
I hate the fact that he may get made fun of. Other kids can be so cruel
to the kid who has problems. I can forsee years of counsoling. I am aslo
confused about this disorder is it mental or phisical, a disease or a disorder.
If any one can help please do. thankyou
Laurie Snyder <LLsny@yahoo.com>
Irrigon, oregon USA - Thursday, September 14, 2000 at 13:17:33 (PDT)
What a blessing all of these letters have been. My daughter was
diagnosed with T.S. about 1 month ago. She turns 10 next week. Now that
I know what T.S. is, I know she has had signs of it for many, many years.
She had already been diagnosed with ADHD and OCD previously. Then about
a year and 3 months ago the tics started. She is extremely bright, but
is very immature socially. Yet, she has been blessed with several close
friends that accept her and "protect" her from others. She is also blessed
with a great church family that love her dearly. But, her motor skills
seems to be going backwards... is this part of T.S.? Her handwriting ability
peaked last year in 3rd grade and is now increasingly getting worse, as
well as her gross motor skills. She has started Taekwondo, which has helped
alot. I wish there was a support group in our area, but have not found
Susan Brown <firstname.lastname@example.org>
Barling, ar USA - Tuesday, September 12, 2000 at 21:17:11 (PDT)
I am 29 years old, and I have Tourette Syndrome. I was diagnosed
years ago, and was taking Klonopin. I still have the tics. It is very hard
to try and not have a "tic" when people are around. I have not had the
medication since I was a teen. I still find it very difficult, and am afraid
to see my doctor about this disorder. I think he may think I am wrong or
something. I do appreciate your website and it's new information. Thank
Theresa~Marie Delaney <Breeze1880@aol.com>
Knoxville, TN USA - Tuesday, September 12, 2000 at 04:31:50 (PDT)
We have a 12 year old son who was diagnosed with TS 2 years ago.
We've been to Boston Childrens and Toronto General and both hospital specialists
have encouraged us to start him on Risperadone. We have tried several other
medications such as clonodine, paxil, luvox. Has anyone out there ever
put their child on this Risperadone. If so, can you please give me your
Ronnie Lewis <email@example.com>
Bermuda - Monday, September 11, 2000 at 06:22:19 (PDT)
Hi! Great to talk to you all.My hero is 12 and yes he has the tic
attack.It took 5yrs to get a diagnosis.Actually my husband and I sold our
house and went back to University and made the diagnosis ourselves. We
had seen so many doctors and argued with sooo many teachers we knew it
would be the only way.Finally 1 month ago we were told what we had been
telling everyone for years.Jack is a real inspiration and i know you are
all lucky to know someone just like him.
brisbane, qld australia - Friday, September 08, 2000 at 02:43:56 (PDT)
Thank you for your website. It is a great relief to know there are
so many others out there with the same questions and fears that I have
experienced. My 8 year old son was diagnosed last year. His tics are all
classic, with the squeaking, lip smacking, jumping up and down. I have
noticed an increase in his tics when we mention baseball. He lives for
baseball and excels in it. He carries his glove around wherever he is,
and recently played on the all-star team in his league. Everyone always
comments on his energy level. He gets the whole team excited with his enthusiasm.
Although, we realized that the mention of baseball eacerbates his tics,
I would never dream of taking baseball away from him. It is his true love.Some
day you will all read about Chad in the pros and how he overcame his Tourettes.
Thanks again, for the great site.
Michele Timmins <Tilt1up@aol.com>
Encinitas, CA USA - Tuesday, August 29, 2000 at 16:57:39 (PDT)
My son who is three years old was just diagnosed with Tourette Syndrome.
I found your site to be very useful and helpful to me. It has really put
things in better perspective for me and has put my mind at ease. I do have
one concern that maybe you can help me with. Whe my son was 10 months old
he had a mild reaction to the measles, mups and rebella immunization. It
was after that I notice that he started with the tics. Could it be possible
that the immunization might somehow be lincked to causing tourettes syndrome.
Do you know if any reserch is being done on this. I am very concrned about
giving him his 2nd series of shots, which he is suppose to have at 4 years
of age. I do not know if I should still give him the shots or wait until
later on to give it to him. Can you please find someone or some type of
material that could possibly help me with this question. I do not know
where to look. Thanks in advance Ann-Marie Zenetos
Ann-Marie Zenetos <firstname.lastname@example.org>
Toronto, ON Canada - Tuesday, August 29, 2000 at 08:07:48 (PDT)
Found your site for the first time today. Very informative and very
well done. Our son is 17 and was diagnosed with TS when he was 6 years
old. We took him to the Dr. thinking he had allergies since he was continually
clearing his throat. Our family doctor was called out on an emergency the
day of our appointment, so we had to see his associate. His associate immediately
diagnosed TS. I fell apart since I had just viewed a report on one of the
major network news magazines of a man who couldn't even function in society
because of his TS. What a blessing it was though, that this Dr. was the
one to see us that day. He was reassuring since he daughter, too had TS.
Well, 11 years have passed and we have made it through. Our son is a well
adjusted "normal" teenage boy with lots of friends. He excels in sports
and is third in his class academically, taking accelerated classes. His
friends have accepted his tics and just know he "moves" sometimes. He was
back to his neurologist just last month and the neurologist asked him if
he had any friends. Ross said he had a lot of friends. The Dr. asked if
they made fun of him. Ross said no, that they all accepted just as he was.
The Dr. turned to me and said he thought he was well adjusted and there
were no problems, so he thought maybe he should treat me and not Ross.
That sure helped to put things in perspective for me. He is much more adjusted
about this than I have been. I now try to look at what a great kid he is
and accept him like every one else has. I was worried about his acceptance
in our society today, but he has made the adjustment without much pomp
& circumstance. There is light at the end of the tunnel and a great
Kennard, IN USA - Friday, August 25, 2000 at 07:10:29 (PDT)
This was my first time to visit this site.I think that this is a
great site and I look forward to being able to visit it a lot more.We have
a son who is 9yrs old he was diagnosed in July of 2000 with tourette syndrome.He
has had both motor and vocal tics for quite sometime.If there is anyone
out there who would like to make a comment to us then please by all means
feel free to send us an e-mail to us at this e-mial address: jamiegirl_65@Yahoo.com.
Jamie Sparks <email@example.com>
Grandview, MO USA - Thursday, August 24, 2000 at 13:12:06 (PDT)
Excellent site. As a newcomer to the syndrome my awareness has increased
tenfold and I feel much more balanced in how to approach the situation
with our 8 year old. Keep up the good work. Regards
Frank Smyth <firstname.lastname@example.org>
Dublin, Ireland - Wednesday, August 23, 2000 at 07:09:53 (PDT)
It is wonderful to have a place to write your heart out, and share
experiences with others. My son is 36 and is terrified of the work world
and has a reluctance to learn the rules of the work world. The tics are
"piece of cake" compared to the inability to grow up. Does this ring a
bell for anyone? I t is wonderful when families are full of love, and can
give love and support to their children. Some of us are not so lucky, but
have our own anger to deal with, our own marital problems and different
points of view from our spouses. These are the problems I face. Thank you
for listening. I am email@example.com
Ann Arbor, MI USA - Tuesday, August 22, 2000 at 09:35:32 (PDT)
Thank you for this wonderful and positive site. We have a 10 year
old boy with TS and an 8 year old girl with ADHD. I wish our teachers and
peers could be reached out to so they could see how great our kids really
are and how wide spread this dx are. (OUR KIDS ARE NORMAL!)
Fayetteville, AR USA - Thursday, August 17, 2000 at 12:30:25 (PDT)
What a great site! My 10 year old son has TS and 8 year old daughter
has ADHD. We have a very hectic household, but lots of love and patience!
Tracy Nelson <firstname.lastname@example.org>
Fayetteville, AR USA - Thursday, August 17, 2000 at 12:27:03 (PDT)
i am very grateful to have found your site. my son was diagnosed
about 6 months ago at age 7. he is currently on clonidine and it has helped
his tics and state of mind. i am mostly grateful that i am no longer alone.
thank you for all you do for all with ts and all the associated disorders.
gina lunardo <email@example.com>
plymouth, ma USA - Tuesday, August 15, 2000 at 17:10:04 (PDT)
I thank you for this informative and reassuring site! I am particularly
interested in people's experiences with explaining TS to their children.
My son is now asking questions about why he does what he does and what
can be done about it. Any thoughts would be most appreciated.
Fern Fisher <Fernfisher@aol.com>
Brookline, MA USA - Monday, August 14, 2000 at 18:39:15 (PDT)
How do I thank you for your web site. My husband and I searched
and searched for a site which pertained to us. My son was diagnosed with
TS in 1999. He is not severe, has never been medicated, and has none of
the other things that ofter go hand in hand with TS. (OCD, ADHD, ADD, etc.)
Our major obsticles have been the emotional toll that TS has when he is
experiencing Tic episodes. He is now nine years old, a loving, happy boy,
who when he is asked why he does "that", he simply states that its something
he can't help, and that it doesn't change who he is. At its worse, when
none of us understood it, when his tics involved head, shoulder, eye movements,
and briefly went into vocal tics,he sometimes couldn't fall asleep, and
would ask, why has this happened to me. As a mother, my heart was broken.
His subsequent episodes have never been as acute. Although I'm not quite
at the "so what" stage, when he has a cycle of Tics, I no longer feel like
I've been punched in the stomach. My son has learned that talking about
what is going in with him, and trying not to worry when the tics are presenting
helps him. Thank you from the bottom of my heart for your site. It offers
so much more than the medical sites which so often did not relate to us,
and did more to scare us than help us. Each day I remind myself that I
can move from Now What to So What. No there yet, but getting closer each
Danielle O'Connor <firstname.lastname@example.org>
Gloucester, MA USA - Monday, August 14, 2000 at 14:19:19 (PDT)
I have two boys,18 &15 & have just come back from yet another
visit to have my 15 year old son Educationally assessed. WE have spent
many years dealing with the behaviour of both boys, the eldest who is always
loud and knows everything. He has mild facial tic's and a sniff. My husband
has a constant nose twitch like a rabbit and a sniff. My youngest son Liam
has been ill for most of his life having suffered Servere Oesophageal Reflux
then contracting Bacterial Meningitis. When i read Marie ben92990 i had
to walk away. I am so lucky to still have my son. Liam has had numerous
cat scans, hearing tests, auditory testing , educational assesments, scopes
up his nose down his throat, you name it every whole they could find they
have put something in there. I have only been home from the Specialist
for a couple of hours and got straight on the net, which is also very new
to me. I am feeling very numb at the moment but it is also a relief to
know that we know more about the hell Liam goes through every day. His
tied of the teasing at school from other children. Liam has servere head
and upper body tic's, as well as coughing continually. We are lucky that
he does not verbally yell out. Im sorry i'm not sure of what things are
called. Liam is the opposite, very withdrawn. With tears pouring down my
face I say thankyou for giving me hope. Lyndelle.
Lyndelle Jeffrey <email@example.com>
Anglesea, Vic Australia - Sunday, August 13, 2000 at 23:28:33 (PDT)
Great website, wish it had been here 4 1/2 yrs ago when my now 8
yr old son and I were first diagnosed. You've done a great job and I will
add your sight to my TS collection of sites I pass on to parents of newly
diagnosed children. Congrats.
USA - Saturday, August 12, 2000 at 15:55:39 (PDT)
my son was just diagnosed with ts he is four years old and has had
the motor tics most of his life it wasnt until that he started having the
vocal tics that i noticed something was wrong. his motor tics are flailing
his arms and scratching on soft surfaces ect. thankyou for your informative
caroline isern <firstname.lastname@example.org>
USA - Saturday, August 12, 2000 at 08:40:48 (PDT)
Blessed, I just read your guestbook again! Your website has reached
so many in a wonderful way! Words could never adequately express how much
you have helped me to evolve to where I am regarding the TS dx for my 3
children. Your persistence in assuring accurate info is available in the
cyberworld helped me to pursue much needed answers for my daughter. *Thanks*
is a grossly inadequate word. Always, TreadinWater
USA - Sunday, August 06, 2000 at 14:52:45 (PDT)
Blessed, I just found your website. What a wonderful gift to
all with TS and those who love them! My son, Alan, is now 12-1/2 and doing
very well. His brother, Brian, is 9, and just saw the neurologist this
week for a dx of probable TS. Didn't faze me a bit! His tics are so minor
that we are going to forgo the meds for the time being. Attitude is everything
- TS-So What!
nr Pittsburgh, PA USA - Saturday, August 05, 2000 at 20:45:13 (PDT)
I am glad to find your site. I'm an adult diagnosed 1 1/2 years
ago, not with TS, but with Chronic Motor Tic Disorder. The reason I am
contacting you is that after researching TS, I have found that my condition
is EXACTLY the same as TS, except I don't have a vocal tic. My research
back then was what prompted me to finally see a doctor about my tics, which
I didn't understand. My mother has them too, as I found out when I finally
talked to her about all this before I was diagnosed. She also has OCD and
sleep problems. I have mild OCD, sleep problems, and what the neuro. defined
as "ADD tendencies." My question to you is, do you know of any local support
groups in my area? I'm in Plainville, Massachusetts. Thank you. Valerie
Valerie Cronin <CrnMchl@aol.com>
USA - Wednesday, August 02, 2000 at 09:21:39 (PDT)
First of all, congratulations of being chosen Member Site Of The
Weeek....strap yourself in, if your week is anything like mine was...lol...I
was chosen two weeks ago, "The Catt Box" and on Sunday alone I had 776
visitors to my site..I wish you much success. I had a good friend years
ago with Tourette Syndrome....and I barely noticed. Having been a double
amputee, myself, I know what it's like to not want to be defined by my
physical disabilities....there is much more to me. "Timmy" also had an
artificial leg. I noticed that his "tics" would increase with excitement
or anxiety, but that was just "Timmy"....he didn't make a big deal of it,
so, we didn't make a big deal of it. Having a physical disability myself
has taught me to not focus my attention on others with "differences"....I
would ask questions so that I could be informed....then just got on with
the friendship. I am so glad you have this site. I think you have done
a great job with it. Keep up the great work. Blessings to you and your
family.... The Catt
catt scruggs <email@example.com>
Boiling Springs, sc USA - Saturday, July 29, 2000 at 07:43:12 (PDT)
I have a story to submit but can not find your email addy????
Snuggle bear <firstname.lastname@example.org>
Uranus, MA USA - Monday, July 17, 2000 at 18:06:32 (PDT)
Sincere thanks for all the hard work you put into this website.
We are in the discovery (and panic) modes regarding our daughter's TS symptoms...
and after much reading, I expect for now that your website will be of greater
help than the medical community! Reflecting on how the internet has changed
our lives by putting so much information at our disposal... I find myself,
and all the people I know, anything but normal. We are all unique and would
be better off surrounded by more positive reinforcement like your readings.
So what is normal anyway? ;-)
Alpharetta, GA USA - Sunday, July 16, 2000 at 10:19:14 (PDT)
Glad to find this site. I need all the info and support I can get.
Husband has undiagnosed TS, OCD, ODD, ADHD, and who knows? Extremely difficult
situation. Denies anything wrong. Children: 21 y/o ADHD, Mood disorder,
26 y/o son-in-law ADHD 18 y/o ADHD, ODD, 15 y/o possible ADD, first 3 from
previous marriage--dad bipolar--next from current marriage 10 y/o TS, ADD,
Dislexia 8 y/o TS, ADHD, 7 y/o TS, rage attacks. Youngest only one diagnosed.
Working on others. No insurance. I am sure I will greatly benefit from
this site. Will add to favorites. I found it looking for "Pass the Prozac"
N/A, TX USA - Friday, July 14, 2000 at 17:45:39 (PDT)
Please check out these websites: http://ourlittleplace.com/tourette.html
N/A, N/A USA - Saturday, July 08, 2000 at 22:18:03 (PDT)
Your outlook on TS is very refreshing. My son's tics were very severe
last yr at this time, but have calmed down enough to be called mild. Reading
your site has helped to put our lives into perspective. Thank you.
Ontario, Canada - Wednesday, July 05, 2000 at 18:40:06 (PDT)
I ALWAYS refer people to your web site because you have a wealth
of knowledge printed here! I truly think you should publish this! You have
done an excellent job! I'd like to comment on something that the person
above wrote about the father of a newly diagnosed child having Tourette
Syndrome. My father had TS+ the whole spectrum. In his day, no doctor could
diagnose this brilliant man. He became an alcoholic - in my opinion, he
"self-medicated". People MUST LEARN to have compassion - to read beyond
the black and white of why families are the way they are. If someone had
helped my Dad - he would not have died an alcoholic alone. (He had a very
successful twin brother - no TS). TS has taught me patience and compassion.
Thank you BB2, love Addy (Canadian friend of BB!)
Vancouver, Canada - Saturday, February 12, 2000 at 07:52:28 (PST)
I'm researching this info for my wifes sister who's 9 year old son
has been diaog. w/ with tourette syndrome. The kid is very very very smart
in school and should be in an excelerated program. The doctor who Diog.
him suggests medications and my sister-in-law doesn't know what to do.
Unfortunately his father is an alcoholic and It is my opinion that this
is most of if not all of the problem. I will give her this information
and hope for the best but I've learned to stay out of their business unless
they ask my opinion. I have 3 children of my our thank God they are all
well. Thanks for the info. JN
john novak <email@example.com>
taylor, pa USA - Friday, February 11, 2000 at 11:42:42 (PST)
I am a single mother and i have just found that my 6year old boy
may verywell have Tourettes syndrome. I'm still trying to find out as much
as i can about this disorder. I must admit that I am a little scared for
my son. I worry that the symtems will get severe and how do i handle all
the problems to come?
Tina Chase <firstname.lastname@example.org>
Topsham, ME USA - Wednesday, February 09, 2000 at 10:24:52 (PST)
Really appreciate this home page. My dtr is age 12, diagnosed last
Thurs. with TS and Anxiety disorder. She began with the flu, then an asthma
attack for which she was hospitalized and then several days at home, she
began making a very distracting vocal tic sound. It sounds a little like
a belabored hiccup. I took her to school and they wouldn't let her be in
the classroom. They drilled her about doing this deliberately (of course,
no one had made the diagnosis at that point.) My dtr is in the gifted program
at school. She is extremely creative. Plays the flute, piano and has a
beautiful voice (takes voice lessons) and appears in as many drama productions
as she can. This is blowing her away in that it threatens her singing voice.
However, she is handling being put in a special needs class (temporarily
I hope). She just wants to explain to classmates what she has discovered
about this illness and go on with her life. We are hoping meds will help
so she can go back to class, but so far, she has only had one day (a Sat.)
that was nearly tic free. We realize now that she does have other more
discreet tics that we just didn't catch earlier. Her father is bi-polar.
We are older parents. I had her when I was 4l. I was infertile for 20 years.
This child is a blessing, no matter what happens with her. We are proud
of her coping with this. She has a wonderful future.
Longview, WA USA - Monday, February 07, 2000 at 22:44:09 (PST)
Thanks for the great web site. I have two boys with TS. OCD runs
'rampant' in our family. It has been a process for me to come to understanding
the 'positives' that come to me and my boys as a result of their TS.
Beth Kaler <email@example.com>
Apple Valley, MN USA - Friday, February 04, 2000 at 11:10:15 (PST)
My daughter was diagnosed with tourette in october of 1998. i'm
still learning about tourette. i have a lot of questions about behaivor,
rage, frustration and pretty much everything that goes with this syndrome.
i'm very confused about this becasue most of her out bursts are at me.
i need help on how to help her. she going to be seven soon and i need to
know how to help this child and help myself,
pa USA - Wednesday, February 02, 2000 at 21:09:05 (PST)
Your site is excellent and a very positive inspiration to parents
with TS children. My son has TS+ with ODD and OCD comorbid behavior. His
rage is the worst part of the package. Our decisions relating to medication
are solely based on his rage and physical attacks on my wife and me. He
is 7 years old, weighs 80 pounds and is very physically dangerous to us
when he is raging. He is currently on seroquel, tenex and luvox. We had
him on risperdal for six months last year which helped his behavior and
masked his tics, but he gained 20 pounds. We took him off the risperdal
in Sept. 1999 and his tics returned with a vengeance and his behavior changed
for the worse. His rage is vented only at me and my wife. We are working
with a cognitive behavior therapist as well as with his psychiatrist, but
feel we cannot work on his behavior long term until his medication chemistry
is stabilized. His behavior at school is reportedly very good and he has
no apparent learning disabilities yet. For us medication is not an alternative,
it is a must. The side effects of the neuroleptics are no doubt the scariest
thing any parent can imagine. But facing an 80 pound child with teeth bared,
fists flying and ready to kill, who will soon be a lot larger, is even
more frightening. Yes, we practice Ross Greene's techniques, but when his
rage comes out of nowhere at the mildest question, then there is no time
to backoff, but we just have to play out his meltdown. Medication for our
son has to be the answer to stabilize him. You should field more questions
and answers from parents whose children are on medication and what's working
and not working and why. Thanks, Gordon
Gordon Watkins <firstname.lastname@example.org>
Los Angeles, CA USA - Wednesday, February 02, 2000 at 13:03:24 (PST)
My son is 9 yrs. old with several tics. Has anyone's chid gone through
a critical incident before diagnosis? E-Mail any time. I will get back
to you when I can. P.S. SMILE - WE ARE HERE TO SUPPORT ONE ANOTHER!Thank
Mimi Macko <MCMAKO325@AOL.COM>
lAUREL SPRINGS, NJ USA - Monday, January 31, 2000 at 09:09:32 (PST)
Hello, I am so grateful for your site. My almost-8-year-old son
was diagnosed with TS a few days ago and I have spent all my waking hours
on Internet doing research. By the time I found your site, I was absolutely
terrified. I thank you very much for the site. It made me feel more positive.
It helped me understand that we may be able to deal with this in a productive
manner. My son has lots of motor and vocal tics. I don't like the pediatric
neurologist that diagnosed him (he told me that my son had a nervous tic
disorder and sent a letter to the pediatrician about TS syndrome; if I
had not talked to pediatrician about something else, I would have never
found out) and am trying to find a good doctor. It is almost impossible
to get to the UCSF Tourette Clinic, we are on the waiting list. Any suggestions
would be appreciated. Again, thank you for the goodness in your site.
Julia Bushkov <email@example.com>
Hillsborough, CA USA - Sunday, January 30, 2000 at 11:14:54 (PST)
You seem to know alot about this condition would you know if Asperger
Syndrome is connected to Torrettes Thankyou
Victoria Williams <Tori43@webtv.net>
Philadelphia, PUS USA - Tuesday, January 25, 2000 at 18:52:17 (PST)
Blessed ... I FINALLY visited your website, and am so glad I did!
Susan, AKA PianoLady229 <firstname.lastname@example.org>
NJ USA - Tuesday, January 25, 2000 at 18:28:15 (PST)
I just discoverd this website, I need help in understanding what
to expect out of my 12 yr old son at school in his classroom behavior,
schoolwork, and about teaching him how to stay on task better. He has TS/ADHD.
It seems everyone I know misunderstands what he should or should not be
doing, it seems as though Me-his mother is the only one. Every one else
seems to expect him to act normal and that he doesn't have any TS/ADHD
problems. Any one out there that can relate to me?
shirley couvillon <email@example.com>
new ellenton, sc USA - Monday, January 24, 2000 at 04:52:42 (PST)
Hola BB,te felicito por esta hermosa y magnifica pagina,yo tambien
soy un afectado por el TS y desearia ponerme en contacto con otras personas
relacionadas con el TS, del mundo de habla hispana.Pertenezco a la Asociacion
Española para el Sindrome de Tourette,por ese motivo deseo comunicacion.
I wish to contact with other persons with TS ,please send email to.Thank
you. Muchas gracias por todo BB es esta, una muy buena acción.Hasta
Barcelona, Spain - Sunday, January 23, 2000 at 06:39:46 (PST)
Holla BB, eres un Angel, gracias por tu website. Soy Maria in Madrid
do you remember?? I have ticced as long as Ican remember, I never heard
about TS until now, I am 53. I do not feel alone, I do not feel like a
big 0 anymore. Muchas gracias espero charlar contigo pronto, el chat MGH
no funciona desde algun tiempo. I miss you and all the friends from the
chat. Un beso. Maria firstname.lastname@example.org
Maria de Fátima Casals <email@example.com>
Madrid, España - Sunday, January 23, 2000 at 04:54:32 (PST)
I love your web site, my son has been diagnosed with TS for the
past 6 years and with meds his tics have subsidedquite a bit, he also has
OCD and ADHD. He has a tough time making friends. I'd love to hear from
other parents of middle school kids to hear how they are living with TS.
mukilteo, WA USA - Friday, January 21, 2000 at 09:33:03 (PST)
Great Site! Always glad to get more information on TS. I have a
ten year old daughter with TS, OCD, ODD, and ADD. I have a six year old
son with ADHD. He is very similar to his sister and it makes me nervous
that he to will develop TS.
Michelle McCready <firstname.lastname@example.org>
Mission Viejo, CA USA - Thursday, January 20, 2000 at 23:03:10 (PST)
Excellent presentation to the newcomers to this subject. You capture
an attitude that is very wholesome and healing. My daughter with TS commented
compassionately about a youngster in church that was struggling socially,
"Gee, Mom, we're ALL broken SOMEhow!" Amen, little sister of mine! So let's
be about loving each other! Thanks BB2!
c. muzal <email@example.com>
Seneca, SC USA - Wednesday, January 19, 2000 at 13:23:09 (PST)
I have a 15 year old grandson with tourettes and now the DR. says
my youngest grandchild has symptoms of it
Daniel L. Neu <firstname.lastname@example.org>
Canisteo, NY USA - Wednesday, January 12, 2000 at 06:51:07 (PST)
My husband and I have an 8 year-old son with TS. He has been diagnosed
since 1998 (age 7). We are fortunate to have a very active and supportive
TS Chapter. Our son also has hypoarousal and a dysfunction or lack of development
of the amygdala. He can not appreciate consequences due to his pathology.
This makes for an interesting approach to behavioral therapy. His pathology
also makes for a catch-22 situation with regards to medication considerations.
He does not currently take medications. We are intervening with classical
conditioning. He is in second grade and the school team is excellent, especially
his 2nd grade teacher and his Special Education Teacher. We have had some
rocky roads with the school environment but we are learning together by
trial and error what works for our son. The challenge is that what works
today may not tomorrow. I will definitely visit this site often to learn
what's new about TS.
Jennifer Dwyer <email@example.com>
Cicero, IN USA - Thursday, January 06, 2000 at 15:46:35 (PST)
I would like to thank you for taking time to write these letters.
I have a son, Dustin, he is 10 years old and has been diagnosed with tourette
syndrome.So far he,his Dad and I have been coping pretty well.It really
helped him alot when his teachers explained to the other children about
his tics,most of them stopped making little remarks about it. That was
bothering him more than the tics were I think.
Eileen Smith <firstname.lastname@example.org>
Clinton, Ar USA - Thursday, January 06, 2000 at 10:09:23 (PST)
I appreciate this website. I am a mother of four, three of which
have learning disabilities, ADHD, and OCD. Also, my 16 year old has some
facial grimicing and now the doctor is saying my 8 year old may have TS.
IL USA - Wednesday, January 05, 2000 at 00:28:47 (PST)
THANK YOU SO MUCH FOR SUCH GREAT INFORMATION. MY SON WHO IS 17 HAS
TS. WE ARE STILL IN DIFFICULT STAGE OF DEALING WITH THIS. YOR SITE HAS
REALLY HELPED ME IN UNDERSTANDING TS. THANKS
TAMMY SINGLETON <SINGLETA@AOL.COM>
MACON, GA USA - Tuesday, January 04, 2000 at 21:45:57 (PST)
Excellent site and well done. I will definately bookmark this page
and pass on to my Other Ts friends in Canada. Best Regards Moma Touresa
Moma T:) <email@example.com
Ontario , Canada - Monday, January 03, 2000 at 05:55:39 (PST)
I'm new on the web. We are indeed also blessed by two. I, myself
have TS/OCD., and so does my daughter Samantha, age 8. I wanted to tell
you that you have a wonderful site and that I enjoyed reading the other
entries. (several times, ha,ha) Please reply if possible. Thanks. and God
Bless your family.
Remlap, Al USA - Saturday, January 01, 2000 at 20:39:13 (PST)
thank you ANGEL of this new seemingly (until i read your web-site),
ROBYN KEOUGH <firstname.lastname@example.org>
Brentwood, mo USA - Tuesday, December 28, 1999 at 21:25:20 (PST)
Thank you! your site has been a great help. I'm still a little puzzled
but I think I'll catch on at some point. A friend of mine has been diagnosed
with TS and I wasn't really sure what it was. He seems absolutely fine
so I was eager and very curious as to 'what' it actually was.
Seoul KR - Sunday, December 26, 1999 at 03:52:40 (PST)
My son is not diagnosed, but has a variety of tics, anxieties and
educational difficulties. I did not know where to turn - but now I have
found you I no longer feel so isolated. Thank you for your generosity and
uk - Tuesday, December 21, 1999 at 01:37:05 (PST)
Thanks for your info on diving! I didn't know where to look for
info and once again the MGH site came through. I love your site and wish
I'd had it 5 years ago. DK
D. Kroner <email@example.com>
Santa Rita, Gu USA - Sunday, December 19, 1999 at 03:14:46 (PST)
Great site. It feels pretty isolated where I am. I know my 11 year
son has TS, but it's a very lonely walk right now. The rest of my family
don't think there's a problem, and my doctor thinks I'm making a deal about
nothing. It's just so good to know there's support out there.
Guernsey, UK - Saturday, December 18, 1999 at 03:32:42 (PST)
I work with a boy who was diagnosed with TS. He is now in 5th grade
and is doing well for all the difficulties he faces minute by minute. I
am a speech and language therapist and my biggest job in this area is educating
the regular education teachers on this. It isn't easy but I am stubborn
so I keep on pushing. There was an incident today and thanks to others
who understand. I want to do what is best and I feel I do. Sometimes, being
the between person understanding the teacher, the parent and the child,
and myself is "bigger than me." I am signing in to let you know I am here
for you, trying my best. I say a prayer before I talk to the child, the
parent or the teacher because I am not sure of my own answers either! Other
special education teachers are a big help to me. My job is to get the parent
and the teacher to keep communicating. What a job! The young child is a
wonderful addition to my caseload! firstname.lastname@example.org
Mary S. <email@example.com>
Janesville, WI USA - Wednesday, December 15, 1999 at 12:25:59 (PST)
yeah..... well i liked the pages you have on aol about tourette
syndrome and just thought i would tell you my thoughts and comments thank
you please respond sincerely ashley
ashley westwood <firstname.lastname@example.org>
auburn, wa USA - Friday, December 10, 1999 at 18:38:55 (PST)
Hi! Thanks for the reassuring site. I sought out a diagnosis in
order to get respite from our county. Previously, my son was diagnosed
with ADHD and ODD. I was thinking Asperger's (I still do) and the doctor
said "Tourettes." It was a surprise as I have done alot of research. He
immediately prescribed Tenex even though I did not ask for medication or
discuss much regarding my son's behaviors. Thank you for reassuring me
that medication may not be the key to my son's adjustment. We have found
altering the school environment by home schooling to be the most helpful
in our son's case. Why must all children learn in a herd? Thanks for the
USA - Monday, December 06, 1999 at 09:04:20 (PST)
Thanks for the info. Its very useful. My son is 6 and has ts and
mild ocd. The tics are not a problem his behavior is. He is impulsive,
aggressive, sensitive, crys easily, defiant to request, touchs other people,
and sometimes hits people. Would like to hear from others who have behavior
problems with their children and what helped them or might help me. Thanks
for the information.
Angelique Cartier <email@example.com>
Jax, AR USA - Saturday, December 04, 1999 at 14:54:22 (PST)
My son is 10 and was diagnosed in February 99. He is very bright
and full of life. I have to say when I noticed his tic I freaked. We went
to neurologist and he was put on clonidine. It works somtimes. Since the
tic is in his neck his neck hurts when the tic is active. The clonidine
was making him sleep all the time so the doctor prescribed risperdal. After
reading about it I was once again freaked. I did not want to do anything
to alter who he is his personality. I had to taper him off the clonidine
and when I started this process his tic slowed way down. I did not have
to start the risperdol. Now his tic is bothering him and he is getting
frustrated. If you have any information about experiences with the medications
that would help me make that decision I would be very grateful. I have
been searching the internet for information for quite some time but I am
not internet savy. Any info, chat group, advise would be greatly appreciated.
Thank God I am not alone. I pray every night that I will have your "So
What" attitude and sometimes I think I am there. Thanks again. Glenda
Glenda Atkinson <firstname.lastname@example.org>
Navarre, FL USA - Monday, November 29, 1999 at 14:48:20 (PST)
I don't know how to thank you for your web site. We are to visit
a specialist in two days for a diagnosis on my 6 year old daughter. As
her father has Tourette syndrome, I am pretty familiar with the symptoms,
and know in my heart of hearts that she has it. Her father has a severe
form of the syndrome, we are now divorced due to his violent behaviour
(who knows whether that has anything to do with the illness). I was terrified
about going for a diagnosis, but having read your pages I feel much more
positive about it- after all, a dagnosis on Monday won't make her any different
from the wonderful child she is today. As she says, she doesn't mind having
her funny 'things' (tics), they make her different and special. Thank you
once again for giving me optimism for the future. Cheryl
cheryl thompson <email@example.com>
cambridge, england - Saturday, November 27, 1999 at 14:25:26 (PST)
MY 18 YEAR OLD HAS TS. I AM AN RN AND WHILE READING UP ON IT I BECAME
TERRIFIED. I HAVE ALREADY LOST ONE SON TO MENINGITIS AND WORRY OVER MY
OTHER KIDS. AFTER READING THE LETTERS FROM OTHER PARENTS I FEEL BETTER
ABOUT THINGS. I HAVE REALIZED WE ARE NOT ALONE OUT THERE.I APPRECIATE YOUR
WEB SITE. I KNOW THAT GOD HAS CONTROL AND MY SON IS IN HIS HANDS BUT IT
IS NICE TO KNOW THERE ARE OTHERS I CAN TALK ABOUT THIS WITH . THANKS.
HONEA PATH, SC USA - Thursday, November 25, 1999 at 09:16:43 (PST)
GREAT INFO! MY 9YR. SON WAS JUST DIAGNOSED WITH TS.I'LL BE BACK
AND WILL SHARE THIS SITE WITH OTHERS.
KAREN LEAVITT <KLEAVITT328@AOL.COM>
LAKELAND, FL. USA - Monday, November 22, 1999 at 18:16:57 (PST)
I have an 8 year old daughter also who was diagnosed a year ago
with TS. BB2 has been a wonderful support source and a ray of sunshine.
Keep up the good work :) and thanks :o)
Stanhope, NJ USA - Monday, November 22, 1999 at 14:36:52 (PST)
Thank uou so much, My 8 yr. old grandson has has trouble with pennmanship
for 3 years. The eye tics started in Sept, now the shoulders, I am raising
him. The pediatricitian said Tourette today. I'm glad I found your site.
Like your son, he is so well behaved and such a bright lovable child, tics
we can live with, I think I will forget the recommendation for Catapres.
Just need to talk to his school, he has very military like-very opiniated,
unbendable teacher. Thanks again, will definately keep in touch. Also would
like to find specialist in Orange county Calif. Any clues? And I too would
like chat room address. Thanks again.
M. Barber L.P.N. <firstname.lastname@example.org>
La Habra, Ca. USA - Saturday, November 20, 1999 at 00:14:25 (PST)
Thanks for the uplifting site. I have three sons 5,3,and 2. The
oldest has TS/OCD,the middle has TS, and the baby has 2 tics. I am an RN
and appreciate the user friendly info. It is often hard for me to explain
things to people in "non-nurse" lingo. Thanks.
Paula Diane <Dbfulmer@aol.com>
LA USA - Friday, November 19, 1999 at 23:56:31 (PST)
We have suspected our 6 year old son has TS for over a year now.
This was my first look at the information available on the internet and
I'm glad I came here first. Your website felt like open arms stretched
out to welcome me. But I am still having trouble moving on to the "so What"
phase and am trying to ignore the obvious. Next time I'll check out the
resources suggested and try move on.
USA - Thursday, November 18, 1999 at 11:17:12 (PST)
Thank you for sharing your website with me. I haven't had a chance
to read it in it's entirety but from what I read so far I am quite impressed
by your candor and your uplifting spirit. I also have a child who has TS/
ADHD and possible BiPolar. He is now 16yrs. old. Presently we are on the
medicine decline mode. He's tried about everything there is and was on
4 different meds up until two months ago. He now takes Risperidone and
Ritalin to balance the TS and ADHD. He is in a waning time right now so
it looks as if the meds are stabilizing the tics for him. I personally
don't believe it has anything to do with the meds. This disorder has a
brain of it's own and will wax and wane as it needs to and at times it
will increase with stress or changes to routine. My son wasn't diagnosed
with TS until he was 12 yrs. old and to this day very few people believe
he has it because they don't see him acting like the "kids on the Maury
Pouvich show." My sons tics were mostly vocal like barking noises, blowing,
chirping, screeching, repetative, mocking, etc. The doctors then diagnosed
him with ADHD at 8 yrs. He was very active and couldn't stay focused for
more than a minute. When he hit 12 yrs. old he started with shoulder rolling,
continuously flexing feet, cracking knuckles, jaw movements, facial grimaces,
twirling, skin picking, etc. The tics got to be less noisy as he entered
High School with the exception of echolalia (repetativeness). The tics
may not always be seen by the casual observer but nonetheless they are
tiresome and distracting for him. I have two more children, the youngest
is my daughter who is showing signs of OCD. She washes her hands so frequently
(to get the germs off) that we've had to put an antibiotic on them and
wrap them with gauze before she went to bed so they wouldn't be so red
and irritated the next day. This comes in phases so we haven't sought treatment
and I'm not so sure I will unless it becomes bothersome to her. I've learned
this from the rollercoaster ride our family has had the priviledge of enjoying
these past 16 years. I, like you, like to see beyond the disorder and emphasize,
encourage, and support each of my children's individual strengths and positive
qualities. One thing we all have to remember is that TS does not define
a child, how you react and treat each situation is what defines TS. Thank
you again for this wonderful, and easy to read website. I'll be sure to
share it with the many people I continue to educate about TS and it's symptoms.
I also wanted to mention another good book that I have found to be very
informative, more so now that my son is a teenager. My son has said that
it's better than the "What is Tourette Syndrome" type of books. It's called,
"The Unwelcome Companion" by Rick Fowler, he has TS. An excert from the
beginning of the book sums it up: When I breathe, it breathes. When I speak,
it speaks. When I try to sleep, it won't let me. Whatever I attempt to
do, it's there...waiting to spoil the moment. To a doctor, it's a disorder,
a medical oddity. To an onlooker, it's a spectacle-perhaps humorous, perhaps
grotesque. To me, it's a monster, a demon, a hellish beast who has no right
to exist in my world or anyone else's--it's my unwelcomed companion.- by
Liz Gerhard <Lizkids@aol.com>
CT USA - Wednesday, November 17, 1999 at 13:02:53 (PST)
You site is an outstanding resource. We are adding it to our webpage
of resources. Keep up the good work
Dr. Alan G. Nemerofsky, Ed.D <ANemerofsky@CCBC.CC.MD.US>
Baltimore, MD USA - Tuesday, November 16, 1999 at 22:56:27 (PST)
I don't know how you got my address but I am so glad you did.Thanks
for the web site.My son has TS and we have known for about 2 yrs.We deal
with it on a day to day bases.He also has OCD's and ADD.My Daughter is
showing signs of this as well.Thanks again!!!!!!!!!!
Jackson, LA. USA - Tuesday, November 16, 1999 at 20:19:50 (PST)
My daughter is 31 and believes she has TS but has not been diagnoised.
She also has panic attacks. She and I have discussed this and she wants
my help. Can you help us find a doctor in Southern California, Arizona,
or Las Vegas? Any suggestions or iinformation you can provide would very
Palm Desert, CA USA - Thursday, November 11, 1999 at 11:04:43 (PST)
Thanks. My 8 y.o. was diagnosed today. In kindergarten he hugged,
by first grade it was interpreted as "hitting". Now in third grade, new
school, new city, re-evaluated with a knowledgeable psychiatrist as an
impulse control issue, ala T.S. Thanks for your insight!
Lynn Kiehne <email@example.com>
Tampa, FL USA - Tuesday, November 09, 1999 at 16:42:21 (PST)
Thank you sooooo much for creating this website!! I am a mother
of a 3 1/2 year old son who has just been diagnosed with TS. I was terrified
about what was to come and now that I have read through your site I am
much more comfortable and shall I say not as paranoid as I was about an
hour ago. I have been reading a lot about TS and everything I have read
has said how terrible TS is and how bad it can get. My son has the constant
eye blinking, the grunting, the shoulder shrugging, and he is constantly
opening and closing his mouth as though he is trying to pop his ears or
something. I really don't want to have to put him on any medication and
I would really like to know how to go about finding another method of treatment.
I am not sure how to start my search for the root of the tics. I would
like to try to find out why he is having them and try to eleviate the situation
if I can. Do you have any suggestions?? I would really appreciate any input
you could give me. Thanks again for all of the helpful and insiteful information
in your website. ~ Mari Giuliani
Mari Giuliani <firstname.lastname@example.org>
San Jose, CA USA - Monday, November 08, 1999 at 20:00:56 (PST)
I am a 24 year old with T.S. & O.C.D., I was diagnosed with
T.S. when I was 10 & later diagnosed with O.C.D. at 21. I have been
on every medication imaginable & finally found a new one Luvox that
has worked miracles. I have been trying to get information on T.S. for
my fiance & your website has been very informative. I just wanted to
say thank you.
Michelle McGuire <email@example.com>
USA - Monday, November 08, 1999 at 10:27:37 (PST)
Blessed- Remember me? I'm Eloise. My hard drive died and I forgot
to save all my things. I don't have the address for the chat group. Can
you please e-mail it to me? I miss talking. Love your website - you're
amazing! I haven't checked it all out yet - am e-mailing you first. Thanks,
Eloise Hiltzik <Elowiz>
Locust Valley, NY USA - Saturday, November 06, 1999 at 16:38:06 (PST)
Thanks for the positive site!!
Pam Levin <firstname.lastname@example.org>
Boothwyn, PA USA - Friday, November 05, 1999 at 22:12:00 (PST)
It's so wonderful to hear positive comments. I have always focused
on the wonderful person my 9 year old son is. When I first started researching
TS, I talked to many parents who gave me stories of medications and hospitalizations.
I was terrified. I knew I would do whatever it took to help my child. At
this time he is out of school due to a lack of understanding and communication
on the school's part;however, there are many wonderful people at our local
school who have helped. I do follow the Feingold diet and feel it helps
him. The best thing for him is the "so what" attitude. He is such a great
kid. I only wish we could hook up with other kids who have TS. Thank you
for your positive comments. Aren't children amazing?
IN USA - Friday, November 05, 1999 at 17:34:04 (PST)
As an educator I was doing research to help a student I think may
have TS. I was happily surprised to find such a positive and supportive
site. Thank you for your work and may God continue to bless you and yours!
USA - Friday, November 05, 1999 at 15:15:06 (PST)
I am so glad that I found this website. Every thing that I had read
until now was so gloomy, with this being such a "dreaded disease" that
I had stopped reading about it. Our son had a fairly mild case, and I didn't
want to read about the more severe cases, since it caused me more anxiety.
He has been on Catapres & Ritalin for about 3 months now, and the symptoms
had become very mild, until this past weekend. Reading this web page reminds
me that this too will subside, and hopefully the symptoms will again be
Los Angeles, Ca USA - Wednesday, November 03, 1999 at 15:40:29 (PST)
I cannot tell you how relieved and how much better I feel after
reading your webpage. My beautiful 6 year old son is, I feel anyway, suffering
from TS. His slight tics go from sniffing, to clearing his throat, to his
latest as of today, gasping. His father and I saw his pediatrician last
year to inquire as to the possibility of TS and were basically told "it
could be. It could also be a mild tic disorder, that unless the symptoms
were drastic an actual diagnosis of TS was probably not possible." Is this
true? I can't seem to find that information. Is it critical to know which
you are dealing with? The tics come and go, one replacing another every
few weeks or so. We have basically ignored them, seeing behind them the
very bright and creative little boy who seems to not be bothered by them.
I have a bit of concern about some recent "angry episodes" he has displayed,
but I would not interpret them as rage per se. In your experience is it
important to seek some treatment or therapy to help him (as well as us)
better understand what is happening? I have concern that his fathers and
my separation/divorce when he was 4 may have been some sort of catalyst
for the onset of these tics; and worry that he may need some additional
assistance (professional) in dealing with his feelings over this occurence.
Help! I realy feel that we handling it well in that we look at this as
just another part of what has made up a remarkable little boy, but don't
want to overlook any treatment areas that we possibly should be exploring.
Thank you again for sharing your very positive and remarkable life with
2 such obviously remarkable children of your own. Our children truly are
our blessings in this life and you have shared your blessings with other
concerned family memnbers so very eloquently.
Lisa Wigen <lisawL@aol.com>
Spokane, WA USA - Tuesday, November 02, 1999 at 22:13:37 (PST)
Finally took time out of the room to check it out and glad I did
Great site BB2!!!!!!!!!!
TS Mom <email@example.com>
Kennebunk, ME USA - Tuesday, November 02, 1999 at 14:30:05 (PST)
My father who is 45, was just recently diagnosed with TS and it
scared me a lot. I am a first year nursing student and when he told me
he was diagnosed with TS, I just about freaked. I am so thankfull to your
page for helping me to understand what I can for my father. Once again,
Jessica Petty <GRUMPY3DOPEY@aol.com>
Mexico, NY USA - Sunday, October 31, 1999 at 08:34:33 (PST)
This webpage is great. I have been researching TS and am very pleased
with your page. I think I have it and you have given me alot of encouragement.
I will look into this doctor stuff and make sure I go to the right one.
USA - Friday, October 29, 1999 at 21:42:19 (PDT)
THANK YOU FOR YOUR WEB PAGE. IT WAS VERY INFORMATIVE. I AM 51 YEARS
OLD AND JUST HAD THE NERVE TO GET A FORMAL DIAGNOSIS OF T.S. THOUGH I HAD
BEEN SELF DIAGNOSED FOR YEARS. I WOULD LIKE TO READ MORE ABOUT ADULTS WITH
T.S. SINCE THAT IS WHERE MY INTEREST LIES. IF YOU KNOW OF ANY SITES OR
BOOKS THAT I MAY BENEFIT FROM PLEASE LET ME KNOW. I AM MARRIED WITH THREE
SONS. I AM A REGISTERED NURSE. I HAVE ALWAYS HAD ALOT OF FRIENDS. I AM
VERY SUCCESSFUL AND T.S. HAS NEVER HAMPERED MY LIFE. NO ONE CARES OR IS
CONCERNED ABOUT IT BUT ME. IT IS FAR WORSE FOR ME THAN ANYONE AROUND ME.
IN FACT MOST PEOPLE AROUND ME DON'T EVEN NOTICE IT ANYMORE. ITS JUST PART
OF ME. BUT OF COURSE I HATE IT! THANKS AGAIN, LIZ
ELIZABETH CLOS <CCLOS48@AOL.COM>
PLYMOUTH, MI USA - Friday, October 29, 1999 at 05:48:39 (PDT)
I hope this will help. We are going to our second Neurologist in
Nov. I am trying alternatives treatments until then,,,diet, cranial sacral
etc... My son is ten and daily his tics get worse. Please help!
USA - Thursday, October 28, 1999 at 21:27:38 (PDT)
Very well put together page. Glad to know that it's out there.
OR USA - Tuesday, September 28, 1999 at 23:14:45 (PDT)
I love your site, and I love your attitude! This summer I figured
out on my own that my 10 yr. old haas Tourrette's. For me it was a big
relief. I had thought for years that we had an escalating behavioral problem.
Now that I know what it is, the pressure is off for both of us. So he tics.
Big deal. This is the same attitude I take with my own Essential Tremor.
So I shake. So what? I can't help but wonder if there is a connection between
Hot Springs, AR USA - Tuesday, September 21, 1999 at 18:42:55 (PDT)
I just bookmarked this fabulous site. My son is newly diagnosed
with TS and ADHD, so I'm trying to get all of the information that I can.
Any feedback will be much appreciated.
Jennifer Blackburn <Jeniccurn@aol.com>
Lexington, KY USA - Friday, September 17, 1999 at 02:48:40 (PDT)
Discovered your site a couple of weeks ago, wish I had seen it 18
months ago when my son (now 9) was diagnosed. After trying Clonidine, nutritionalist,
etc, have pretty much gone to your "so what" attitude. Am much more concerned
w/ his specific l. disab. in reading. Also have a 7 yr old son who is showing
TS signs... Thank you for all the time and effort you have given for this
Cindy J <Cynthjones@aol.com>
Cumming, GA USA - Tuesday, September 14, 1999 at 09:54:45 (PDT)
Your website is great. You put a lot of hard work and wonderful
experiences in it. My son is 15 and was diagnosed with TS last week. In
my efforts to research this I came across your site, and it has given me
a lift. Thank you for your positive attitude. I'll be visiting your website
again soon. Thanks-Judi
Judi Manning <PrtyFlavrs@aol.com>
Arlington Heights, IL USA - Tuesday, September 07, 1999 at 05:41:43
Blessed this is a wonderful site!! all I can say is - WOW. I enjoyed
every bit of it, and only wish I could have had access to it 13 years ago
when sean was first diagnosed. this is a goldmine full if information -
thanks for being there for everyone!!! deb
Levittown, NY USA - Saturday, September 04, 1999 at 14:59:21 (PDT)
Thank you. I received your e-mail and went directly to your site.
I am torn between meds or no meds. My 10yr.old son takes Clonidine and
does not like it. There are days when he is zoned out, not there,not himself.
When he is at home we can manage his behavior but what do we do at school.
His grades did improve quit a bit since he has been on the med. This is
my greatest concern. I want him to like school not hate it. He struggles
so hard and there are nights I go to bed crying because I do not know what
to do. But this is not about me its about Carl. I am now questioning whether
or not he has ADHD or bipolar disorder. If I did not read your site I would
never of known that information so thank you for taking time to create
this wonderful site.
Alburtis, pa USA - Friday, September 03, 1999 at 17:46:14 (PDT)
BB ~ This is wonderful! Although we have been dealing with TS +
for over 11 yrs. now I love to get any and all info. I can. Keep up all
of the good work!
CA USA - Friday, September 03, 1999 at 11:22:27 (PDT)
I have an 8-yr-old son w/ TS and ADHD. I visit the TS chatroom frequently.
It helps me to know that I have somebody to talk to. I have OCD and did
have ticcs as a child. I never imagined one of my children would have to
go through this too. I am so glad there is more help and understanding
about these conditions then when I was a child. My family just ignored
my "strangness" and never thought any thing was really wrong with me. I
want my son to know he is not alone and that he can be just like everybody
else. I think there needs to be more community education about Tourette's.
I have talked to many people who think that TS and OCD are just mental
disorders that can be "fixed" with psycotherapy. I really apprecitate this
site and will direct more people to it.
Lisa Jones("maddy") <firstname.lastname@example.org>
Independence, MO USA - Thursday, September 02, 1999 at 21:28:16 (PDT)
It's great knowing a site of this caliber exist for a condition
society is so ignorant by. I to was not aware of this; being one of ignorance.
Extending my hand out to you BB2....thank you >> Cheryl/Sammy, Son,15
with TS,OCD,ADD. Son 13, no signs, merely family but knowing makes a big
difference in our lives, being stronger and every day is a well worth challenge
noting never feeling this challenge only defeat. Bless you
Cheryl Q <JustATypN@aol.com>
Port St Lucie, Fl USA - Monday, August 30, 1999 at 18:43:21 (PDT)
Hey Kiddo! Absolutely FABULOUS job! So nice to see ouuuuuur kids
finally addressed! Now...about that snide little comment on the "Personal
USA - Monday, August 30, 1999 at 03:15:16 (PDT)
BB2, I have watched your struggle and growth very closely - quite
personally as you know. Often, I agonized for you and hoped our friendship
and trust would assist you to rise above that awful "reeling" we both experienced
at different times. And in sharing with you my family's experiences with
TS, I discovered that I grew stronger and found greater insights I had
never articlulated. Through trust and friendship, I think we both found
a clarity and a renewed perspective. Your web site brings this same possibility
to endless numbers of people. It is a wonderful culmination of all the
experiences, personal growth, and reconciled angst many of us parents have
traversed - not to mention the awesome job you have done translating the
literature into "user friendly" terms. I applaud your wonderful success
on this invaluable site and, most importantly, on the home front. TSA can
surely reach its goal of making TS "irrelevant" with you on our side. I
am very proud to count you as a friend.
USA - Saturday, August 28, 1999 at 08:08:57 (PDT)
Very nice work. It all flows together so smoothly in print. I wish
my own family's experience with TS worked the same way.
Oxford, NJ USA - Friday, August 27, 1999 at 19:18:44 (PDT)
Although my son was diagnosed 7-8 months ago I'm still at the stage
where I want all the info I can get, especially with school starting. I
thank you for this site. I started getting very depressed because he started
with very exagerrated body tics and I don't want him teased in school (3rd
grade) but I know this is just another thing to be accepted and it's a
comfort to know there are others facing these same fears.
levittown, NY USA - Friday, August 27, 1999 at 12:15:23 (PDT)
BB, you are one of the kindest, most caring people. thanks for the
support you have given to all of us. Awesome web page. Hugs, love, and
blessings, Mary (^_^)
Mary (^_^) <TNCLAN@aol.com>
WI USA - Thursday, August 26, 1999 at 06:18:29 (PDT)
This site is great. I wish it was the only one I had when I started
on this journey 2 years ago. The MGH forum merely terrified me into total
panic. I suspect my ped/neuro reads this site because, at the end of our
visit he said, "yes she has it, so what." I didn't appreciate it at the
time but now, after reading your site, I do. I plan to change my whole
focus right this second and start enjoying my 9 year old smart, pretty,
atheletic daughter for what she is, a kid who blinks a lot. I loved your
comment that kids make fun of kids who are fat or have big noses too. Her
best friends include a dwarf, twins who have lost all of their hair, a
boy with no language and so on. Her "perfect" friend suffers from depression.
So there you go. She blinks. I feel like I am on a mission now and am grateful
from the bottom of my heart.
USA - Wednesday, August 25, 1999 at 08:47:35 (PDT)
What a wonderful website - So much credibility can be given to you
as a parent who's really been there, done that! Thanks!
MI USA - Sunday, August 22, 1999 at 13:46:33 (PDT)
What a wonderful site! I wish I had found it when our son was diagnosed
with TS 5 yrs ago. Very informative, balanced and candid. I remember crying
for a week, mourning the son I THOUGHT we had lost.....no true. We have
gone from Now what to So what.....this site will help the newly diagnosed
do the same. Thanks for all your hard work BB2!
USA - Sunday, August 22, 1999 at 12:35:41 (PDT)
Great site BB :) Keep it updated and growing...............Bob
Bob Geller <email@example.com>
Narragansett, RI USA - Saturday, August 21, 1999 at 12:06:22 (PDT)
Great site! Just what I needed to read- my nine year old was just
diagnosed two weeks ago. In your book reviews I was all set to order the
Tourette Syndrome: Tics, Obsessions, Compulsions until I got into Amazon
and discovered that it costs $95.00!!! You might want to mention that cost
in your review. I'm going to see if I can find it in a library.
Mimi (different one!)
USA - Friday, August 20, 1999 at 07:18:56 (PDT)
Thank you so much. My daughter fits into the mild catagory of TS
and her symptoms were at their worst when we went to the neurologist and
was diagnosed. She is doing great in school and in her life in general.
I'm the one that worries too much and watches for every little tic. Your
information and approach will help me in the future to relax and see the
positive and stop worrying so much!
USA - Thursday, August 19, 1999 at 05:57:36 (PDT)
Yee-haw! This website gets a rating of 2 purple cowboy boots, AND
a bolo! Nice work, Beeb! Regards, Jo
Joanne Cohen, LCSW <firstname.lastname@example.org>
Milford, MA USA - Tuesday, August 17, 1999 at 19:41:05 (PDT)
Hi BB... Even we haven't met - I'll been waiting for a long time
for you to come up with a web-site like this. Smashing!!! I've been "following"
your effort and spirit for a long time and know that the net is just perfect
for you. Keep it up....(as allways) "See you...." Christian jr.
Christian Melbye jr. <email@example.com>
Oslo, Norway - Monday, August 16, 1999 at 13:25:18 (PDT)
Just stumbled on to your website. I think it is great. My son is
seventeen and has TS+. His story is not so good. He has been discriminated
against in this states school system. I recently found notes in his school
record where the higher-ups and local attorney were using the mental health
and DFS to remove him from our home. This way the school district did not
have to meet his needs. We were forced to move but new school won't work
with us either. At present I am trying to find people who want to see new
law made. There has not been any case law using a child with TS. My son
is now a drop-out with no future. This might not be interesting to any
one here but I just felt like sharing with people who really know about
TS+. I have become an advocate to children in the public school system,
helping them get their "unique" needs met under IDEA. My son has the worst
case of TS that any one has seen---so I'm told. I wonder how bad he would
be if the right program would have been designed forhim at an early age.
marilyn McGee <firstname.lastname@example.org>
Raytown, MO USA - Sunday, August 15, 1999 at 13:06:38 (PDT)
I am one of those parents with a newly diagnosed child. He is 8
and was diag. on 7-99. It is very difficult to obtain information geared
for the overwhelmed parent. You have done a wonderful job! I always "try"
to think positive and if the worst happens... I'll deal with that when
it comes. Your positive views are what parents need to hear in the beginning.
Thanks for your wonderful contribution to the frightened, angry, confused
parents that don't know where to turn.
USA - Thursday, August 12, 1999 at 16:29:38 (PDT)
HEY!! Many thanks for telling me about your site! Information such
as you have provided can only assist those "in the dark" about TS. KUDOS!!
By the way, if I can be of any assistance, please don't hesitate to call
on me. Thanks Again!!
Greenfield, MA USA - Wednesday, August 11, 1999 at 08:00:05 (PDT)
Wow, looks terrific! Do you have spell check on this thing? Just
checking! (Just a little nuance there!) Do I get to be next to Chuck and
Jim? Or do I have to go to the end of the line? Well, you know what I think
about word choice, and I'm so proud to see such an effort in relation to
a condition that we have come to learn from, delight in, cry over, and
embrace with our whole spirit! Now where did you say the coffee was? Marietta
MI USA - Monday, August 09, 1999 at 21:11:55 (PDT)
Beeb, Way to go! It is gratifying to see a new TS site on the web
with a message of hope for *people* who happen to have Tourette Syndrome
and the *people* who love them. A lot of "these kids" grow up to have happy
and useful lives, good jobs and healthy relationships. Some of us not only
"turned out OK in the end", but we were bright, cheerful, singing, joking,
laughing, loving, generous, helpful and delightful to have around all along
the way. We had a number of peculiar movements, sound effects and other
"habits", but that was not what defined us. I really enjoyed reading about
your two sons. They do you credit. Cheers!
Blue Tics <email@example.com>
NJ USA - Monday, August 09, 1999 at 16:15:09 (PDT)
Dear BB2: Thank you for your kind words and the effort reflected
in your web site. It is one that I will encourage parents to use and peruse.
Jim Leckman <firstname.lastname@example.org>
New Haven, CT USA - Monday, August 09, 1999 at 15:10:49 (PDT)
BB2, the TS community owes you big time. This is a very wonderful,
uplifting and informative site. Thanks from my son and me.
OK USA - Sunday, August 08, 1999 at 18:16:03 (PDT)
BB2! This is great. I too wish I could have had this resource when
my daughter was dx. It took a long time for us to get to the 'so what'
stage and I've often felt out of place at our support group, on the message
boards etc. because of our lack of problems with our daughter's TS. Thanks!!!!
USA - Saturday, August 07, 1999 at 08:45:11 (PDT)
I am a 28 yr old mother of 3 that has had a series of situations
arise with my middle child who is 6. He has been diagnosed with A.D.H.D
and physically or otherwise health impaired(POHI). He has a severe virus
that caused him to develop warts all over his hands. When they couldn't
get any worse he would sit for an hour and pick and pick. The docter that
was treating him had no reason to prescribe any medicaton because he had
picked them off. Is there any wasy you could let me know if this is related
to TS? I am desperate and I adore my son. Please let me know. By the way
this page is the greatest. God bless you and keep up the good work:-)
Lisa DeHuelbes <email@example.com>
Lansing, Mi. USA - Thursday, August 05, 1999 at 10:10:24 (PDT)
Congrats BB2!! You have always been there for so many, I look forward
to passing this on to others! What a great service to all TSers everywhere,
USA - Wednesday, August 04, 1999 at 23:19:03 (PDT)
Looks to be a really good informative web site. I will go away and
read it up properly! (From a coservative Britisher)
Brett Wolfindale <firstname.lastname@example.org>
Yarm, UK - Tuesday, August 03, 1999 at 17:17:44 (PDT)
My 7y.o. grandson has trigger rapid soft coughing (like 20 per minute)
notedover the past 2-3 months. Can this be just a tic or a manifestation
of Tourette Syndrome? Your knowledge of the entity will help us
Ernie Weitz <Erniewe@aol.com>
San Francisco, Ca USA - Tuesday, August 03, 1999 at 16:23:55 (PDT)
BB2, Terrific job! (As always) You have filled this gap in the TS
community nicely. Thanks, and looking forward to more. Barb
IL USA - Monday, August 02, 1999 at 12:53:13 (PDT)
This is wonderful!!! Wish I could have had some of this information
when son was dx.
Luann <Lyg33 @AOL.com>
USA - Monday, August 02, 1999 at 11:27:07 (PDT)
I am so pleased that have finally put all the information down that
you have been storing in your head for all these years. You are one brillant
woman and all us parents are so grateful for your knowledge and help! thanks!!!!
Rose <Dawl House@aol.com>
Boca Raton, FL USA - Monday, August 02, 1999 at 07:37:13 (PDT)
Blessed, you have articulated so well what my own parents 'knew'
intuitively: you learn and do what you can to make life the best it can
be, and then you go on with it. You accept 'differences' for what they
are, merely differences, some more difficult than others. But, above all,
you love your child. The older I get, the more I appreciate that, and the
wonderful life that they encouraged me to find. (And I did.) Nice goin',
Blessed. You have presented a balanced point of view that can't help but
help us all.
Kathryn A. Taubert <email@example.com>
Newtown, CT USA - Monday, August 02, 1999 at 06:48:58 (PDT)
What a wonderful, reassuring, informative website...thanx
Homestead, FL USA - Sunday, August 01, 1999 at 19:51:58 (PDT)
Nice work!! The perfect outlet for you to show your genuine concern
for those persons and families who are less affected by the symptoms of
TS and it's frequently associated disorders. I sure wish I was one of them!!
Germantown, MD USA - Sunday, August 01, 1999 at 19:20:48 (PDT)
It's a beautiful website, great inspiration. You have done a wonderful
job! I'll definitely direct people to it.
USA - Sunday, August 01, 1999 at 10:09:29 (PDT)
Looking on the "bright" side is our "MO". This website reinforces
what CAN be achieved. Thanks!
ri USA - Sunday, August 01, 1999 at 07:52:39 (PDT)
were your ears ringing last night? i had dinner with 2 other moms
fom the parent soup board and we were wondering when we would see this
come to fruition! congratulations!
USA - Sunday, August 01, 1999 at 06:34:42 (PDT)
Well done, BB2!
USA USA - Sunday, August 01, 1999 at 04:21:24 (PDT)
You have done a great job on your web page and I wouldn't change
a thing! Thanks for always supporting, caring, and being there.
NY USA - Sunday, August 01, 1999 at 02:56:57 (PDT)
Great website. Very well planned out. I'm sure it'll soon be one
of the top TS websites, in fact.
Sandra Croyle <firstname.lastname@example.org>
Hawaii, HI USA - Sunday, August 01, 1999 at 02:27:19 (PDT)
Very nice. You are so articulate. Thanks
N Welch <NanlorW@aol.com>
USA - Sunday, August 01, 1999 at 00:20:21 (PDT)
I wish I could have read this in 1/98 when my son was diagnosed.
Great job BB2.
NJ USA - Saturday, July 31, 1999 at 21:05:08 (PDT)
I love it! It is great to share with others that are in the same
neurological boat! Thanks.. Ellen
Ellen <Ellen McN@AOLcom>
Bensenville, IL USA - Saturday, July 31, 1999 at 20:57:14 (PDT)
Great job!!! As always, I love the positive approach you have....
WA USA - Saturday, July 31, 1999 at 20:15:14 (PDT)
I'm very impressed with this site. Thanks for your effort, and I
appreciate the support provided.
MA USA - Saturday, July 31, 1999 at 19:11:19 (PDT)
Just wanted to make it official that I visited your site.
Gary Marmer <email@example.com>
Phoenix, AZ USA - Saturday, July 31, 1999 at 12:31:31 (PDT)
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