Tourette Syndrome - Now What? Guestbook 3
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Enjoyed the site. I visit TS sites from time to time to keep informed. I
sometimes come away with information I can pass on the our chapter of TS. thanks
dallas USA - Wednesday, January 09, 2002 at 16:58:20 (PDT)
My nine year old daughter has recently been diagnosed with TS and we are
still in the info gathering stages. Her tic looks like a stretching movement and
has gotten progressively more frequent in the last month until it seems to be
all she does. Another, more disturbing, problem is that she appears to 'zone
out' sometimes after a stretching tic. She is unable to hear or respond for a
few seconds and her eyes shift to one side. She has had 3EEG's so we know itis
not a siezure, yet I am afraid that she will not be sble to function at school
if these episodes continue. Her pediatrician (who has a large TS practice) has
suggested using a low dosage of Zoloft only if she is very upset by the tics or
unable to function at school. Has anyone ever had these zoning out symptoms with
TS? Also, I'd appreciate any advice on the Zoloft. I don't want to medicate her
unnecessarily, but her ticcing and zoning are pretty bad right now. Thanks for
the great website.
email@example.com USA - Thursday, January 03,
2002 at 17:48:47 (PDT)
I'm an 18 year old female who was diagnosed with TS when I was 12. For
those of you who have done much research about TS you'll know that it is very
unusual that TS occures in females, as it is dominate in left handed males.
<I am also right handed :) > For those of you who are trying to help you
children deal with TS it is very critical that you are very supportive and
encouraging to them about it. It was very upsetting for me in the beginning,
trying all kinds of different medication and their horrible side effects. I
ended up deciding to deal with my tics rather then the nasty side effects in my
eighth grade year because they made it almost impossible to be active in sports.
My tics are also very unusual. I have two inturnal tics (My diaphram spasms
causeing a vocal huff sounding a little like a cat hacking up a hair ball, and I
get catches in my lungs which is very scary because it makes it very hard to
breath, and if I get to upset I tend to loose my temper alot quicker then most
people and black out saying things I don't mean and would have never said if not
pushed to "my breaking point" and this is very flustrating and I'm
still trying to learn how to avoid getting to my "breaking point")
I've also out grown many tics befor I was diagnosed such as the common eye
twitches and ear popping. My boyfriend also has TS and it is very helpful as I
have someone who REALLY understands how I feel and what I'm talking about when I
talk about it, he has multiple muscle spasms throughout his body, he is 21 and
was diagnosed at the age of 8, he also has chosen not to use medication as his
tics aren't as bad as the side effects of the medication. I encourage you to
teach yourself as much as possible about TS to help who ever around you that may
have it. Good luck and God bless!
USA - Friday, December 28, 2001 at 07:49:01 (PDT)
My 15 year old son was just diagnosed on the 19th of December. I have been
telling doctors for about 2 years that I suspected it and no one would listen to
me until he started having what they thought were mini seizures. He is totally
embarassed by it and gets upset when I try to discuss it with him. He doesn't
realize what he is doing. He would tell his friends and me that he just had dry
eye syndrome and that's why he blinked so much. You see, that is the only
dianosis that I could get from any Dr. Also, one told me if the jerks and
twitches didn't affect his daily routine, then don't worry about it. Well, it
has since gotten worse. I just hope that he can learn to deal with it. Your site
God Bless Judi Mixon
Pineville, LA USA - Friday, December 28, 2001 at 07:33:06 (PDT)
I'm a mother of two boys, 9 and 5 years old, and I'm almost sure the
younger one has Tourette's Syndrome. He will be seeing a neurological-doctor in
January and hopefully my "worries" will be confirmed. I've been
reading a lot of information on the Internet and this site is the best yet! Lots
of information and also a great support - full of hope, understanding and
acceptance of every person as they are...not what they "should" be! I
thank you very much and I will certainly be back again :o)
firstname.lastname@example.org Iceland -
Wednesday, December 26, 2001 at 18:00:09 (PDT)
My husband has TS and suffered greatly from his family's and society's
misconception of it. We have a 3 year old son that began "clearing his
throat" this past summer. Thank you for your wonderful information.
cincinnati, oh USA - Tuesday, December 25, 2001 at 10:47:26 (PDT)
We just found out our son has Tourettes and he seems to be having a hard
time in school. Has anyone else had to deal with this too? Please help us we
want to give the best for our son. God Bless
Chino Valley, Az USA - Friday, December 21, 2001 at 13:34:32 (PDT
I am so thankful for your web site. I just took my grandson that lives
with me to the Doctor this morning because he has been blinking his right eye
for ever a week. The doctor is sending him to a neurologist next week. She seems
to think it is TS. I was so scared because I had done some research on the
internet and some of the articles really had me upset. After reading your page
it has really hoped me to be able to cope with whatever happens. He is a
wonderful 7 year old boy and it has made the principals list since pre-school.
He just made student of the year in the Isshinryu hall of fame. He won student
of the year for the last two years at his karate school. Please pray for us.
Minden, LA USA - Thursday, December 20, 2001 at 13:28:29 (PDT)
My 8 year old daughter was diagnosed yesterday 12/19/01.
Asheville, NC USA - Thursday, December 20, 2001 at 06:23:47 (PDT)
Thanks for a wonderfully informative site. My 6-year old son was diagnosed
about 6 months ago and it is always helpful to read about others who deal with
this daily. It makes our journey that much less stressful and more rewarding.
Thank you again.
Niantic, CT USA - Tuesday, December 18, 2001 at 14:15:31 (PDT)
hey this site is totally awesome , i laughed , i cried ... it moved me ...
lol . visit mmine sometime if u like :)
, NJ USA - Tuesday, December 18, 2001 at 07:57:08 (PDT)
I always wondered if there other people out there like me. I have never
had TS diagnosed, but I figured I was making noises, blinking, coughing and
shaking my head for some reason. I would read stuff about TS and put 2 and 2
together. I have never met anyone who had TS other than my father. He knows he
has ticks, but it has never been discussed. He just thinks it is because of
nerves. I was pleased to have stumbled onto your website. I almost feel proud
reading about TS. Thankyou for letting me know that there are other people out
there like me.
Palm Springs , CA USA - Monday, December 17, 2001 at 00:12:34 (PDT)
Chicago, IL USA - Saturday, December 15, 2001 at 04:03:30 (PDT)
THANK YOU!! From the bottom of my heart. Our 6 year old son was diagnosed
with TS on Tuesday, Dec 11th. I wish I had found your site right away, but I'm
so glad I found it today. I cried as I read, it all started to make sense. I was
crying I think more from relief than all the other emotions from the last day
and a half. I'm ready to move ahead. Thanks again.
USA - Thursday, December 13, 2001 at 13:46:29 (PDT)
Reading this book has brought a tear to my eye...
I was diagnosed with TS about 6 months ago. I am 17 years old, and for awhile, I
assumed it was normal. Normal to blink excessively. Normal to have my neck
cringe. Unfortunately it wasn't. Since then, I have struggled to deal with the
constant stares and grimaces. If one thing has gotten me through this ordeal, it
has been my hope. I realized that I am normal, and I can lead a normal life.
Last week I was accepted into a Neuroscience/Premed program at a great school.
TS will not hold me down! This is for those of you who don't feel comfortable
just yet...like I once did...
"Tourette's Syndrome is not the end of the world. We all suffer in some
ways. Some of us suffer more than others. BuBut, before you complain about your
problems, think of people who suffer more than you do...think of what you gain
from experience; you learn to be a far more caring individual.
Best of luck, and live life!
email@example.com, PA USA -
Thursday, December 13, 2001 at 10:22:15 (PDT)
I think that this site is a great for all parents that are dealing with
this Syndromes and/or diseases with their children. It gives them a way to
understand what exactly they're dealing with and what they are aware of when
it's narrowed down to this.
Brentwood, NY USA - Thursday, December 13, 2001 at 04:45:06 (PDT)
What a great site. Thanks. My daughter is 8 years old, she started having
tics about 3 years ago. At first I didn't think anything of it, we just called
her bunny nose, but this year since school started she has had more perionds of
tics thanever before. I made the coralation between her and her cousin who had
experienced the same problems and was diagnosed with TS 2 years ago. I am a
nurse and work as a health coordinator for people with disabilites so I knew
where to look for information. She will be going to see the Neurologist in a few
weeks. She does not understand what is going on mostly because I have downplayed
it so much. She has also spent alot of time with her cousin and doesn't think he
has any problems either. I think she is doing great although needs alot of help
to stayed focused. Dad is in denial so we are hoping he comes around soon. The
more I read about TS the more hopeful I am. Thanks again
Syracuse, NY USA - Wednesday, December 12, 2001 at 16:39:56 (PDT)
I am mother of 5 years old daughter and 13 yrs. son. My son as Latourette
Since summer my daughter started common tics include coughing, throat clearing,
sniffing,streching her stomac she says that she have to do it she could not
stop. Why do they say that it is not hereditary it is starting the same way my
son started. This women that tells her story in the home pages says that
her daughter started several tics an then went away. What do I do going tru this
again my son it was living hell, sad, you name it.
Gatineau, qc canada - Tuesday, December 11, 2001 at 07:40:47 (PDT)
I am a college student studying Human Services. I was given an assignment
to evaluate 3 websites on any disease. I chose Tourette's, I have a good friend
with it and wanted to know more about and do my project at the same time. I just
wanted to let you know, that I feel your website is very informational,
informative and of all that I have been researching the best one. Good Job and
Sanborn, NY USA - Monday, December 10, 2001 at 23:15:37 (PDT)
Your website is great. I feel much better about the fact that our
physician thinks my son has TS. We have an appointment with a neuroligist in
Febuary. I am relieved to have some good news going in for the test. My
son is five and is very bright and well behaved but has facial tics and makes
the sniffing and clearing the throat noises. I was so scared that the rest
of the dreaded behaviors were coming. Thank you again for all of your
information and the advice from another mother who doesn't want to drug her
child in order to make them conform to society.
Sincerely, Robin H.
tn USA - Thursday, December 06, 2001 at 19:34:56 (PDT)
I'm a 28 year old graduate from the University of Texas. I have travelled
the world by myself and educated many on TS. I have some famous friends. It's a
tough syndrome. It's not fun to have your arm operated on twice at the same scar
line because you can't stop a tic. It is interesting to see how you coped with a
syndrome you didn't even know you had untill you were 15. However, a great thing
is to know you were part a fraternity at the U.T that was picky about their
pledges, and the fact that you can walk into a company and have them love your
presence. We may have faults, but we can get through it all. This is a great
websight. PLease let me know if I can help any parents or people on advice with
TS. Currently, I havn't taken my pills in 6 months after taking them
continuously for 14 years. My parents don't know any difference. The main thing
we need to do is stay focused and STRESS FREE.
I will think aboput all of you.
Austin, Tx USA - Tuesday, December 04, 2001 at 21:08:49 (PDT)
Our 18 year old son has ceased all head, neck, and eye tics and now only
demonstrates a vocal tic while eating and occationally when very tired. I regret
the side effects of the drugs we used during his pre adolecent years, Ritilin,
Paxil, some others. I wish I knew whether they contributed to his reduced
severity or if it is purly the result of his body chemistry maturing. Richard
was riduculed and even harrassed by teachers in elementary school. so I feel
that although e are blessed, we did see a bad side of the syndrom's effect on
the life of a child. Bearing that in mind i still thing TS Barbie is great, LOL.
My wife is doing a report for a class on exceptionalities and will show barbie
as part of the report.
Wichita, KS USA - Saturday, December 01, 2001 at 09:04:24 (PDT)
I would like to say that the information on your website has been very
helplful. I have a student with this disorder and I am trying to educate myself
more about it so that I can better service him. Thank you.
houston, tx USA - Thursday, November 29, 2001 at 09:36:18 (PDT)
I am an adult whose childhood Tourette symptoms "went away" with
a combination of adolescence and taking up smoking- but who knew? No one ever
named the problem- it was just a bunch of weird "bad habits" I should
get rid of. When my son developed his tics, I was able to recognize the problem.
I also knew when he started sneaking cigarettes, since his tics vanished. I am
glad there is a site like this one to help. It was really worrisome when I was
just the kid with a bunch of weird habits.
USA - Tuesday, November 27, 2001 at 05:27:48 (PDT)
We have an 11 year old son who is just starting to acknowledge his tics
and TS and who feels so isolated and unaware of other boys like him. I hope we
can find some support for him because up to now it has been non-existent from
other parents and children with TS. He is a lovely boy who thinks not thinking
or talking about it will be better, but he feels so alone, and quite frankly so
do we. We have been unsuccessful with the CHat rooms, mostly because we don't
know how to enter them.
We would love to hear from anyone.
Georgetown, on CANADA - Monday, November 26, 2001 at 19:07:18 (PDT)
I just wanted to say that this is a really good site for people who want
to learn about TS or people like me that already have it. It gives lots iof
firstname.lastname@example.org, fl USA - Sunday,
November 25, 2001 at 17:21:45 (PDT)
Nice site, I am working on a graduation project for high school that is
due on January 8th. I have been looking for information and been in contact with
many people. I came across your site, it was great, well designed and thought
out. If there's anyone who wants to help me out drop me an email or contact via
AOL Instant Messenger @ SleepyTrev
~Trevor S. Gehret
Trevor S. Gehret
Albrightsville, PA USA - Saturday, November 24, 2001 at 13:38:38 (PDT)
Our son is 8 years old and has had tourettetes and adhd since he was
five.We had no idea that there were help sites out there.Your site has been an
awseome eye opener!!!! I am his father and I have tourrettes and adhd also.Both
of us have a mild form and do the head jerking and other minor habits.I am able
to control mine pretty well now,But I see my son going through the same things I
did and it really bothers me.All this info. Is brand new to me.If anyone is in
our situation please email me to talk.
spokane, wa USA - Friday, November 23, 2001 at 18:50:40 (PDT)
This site is not affiliated with the TS-Barbie
that was so mean to do that barbie thing!! u r an ass
nashville, tn USA - Wednesday, November 21, 2001 at 22:03:44 (PDT)
I have been searching and reading up on TS as much as possible for the
past week. I was relieved when my daughters teacher told me she thinks my
daughter could have TS because that answeres a lot of questions about my
daughter (5 yr old). I am so happy to have found your sight. The only sights I
have found have been so "clinical".
It's much more informative to get a mother's opinion.
I'm bouncing back and forth between "what now" to "so what".
My main concern now is to find a doctor in my area.
I can accept my child's TS (if that's what it is), but I have already seen how
the rest of society is so misinformed. THANK~YOU!!!
kent, wa USA - Wednesday, November 21, 2001 at 00:46:18 (PDT)
I was so glad to come upon your site. My son was diagnosed with TS over a
year ago and as stated in your web site, the tics would come and go. They are
back again to the point where my son asked to go back to the neurologist to find
a way to help him. I was also glad to find the information on your site about
CAPD. For years we have struggled with our sons "listening" skills and
his inability to process things that were said. He's had several hearing
evaluations which all come back saying his hearing is fine. I had never heard of
CAPD until I came to your web site. Now I will search out an audiologist with
experience in this area. Thanks for your help.
Snohomish, WA USA - Monday, November 19, 2001 at 20:37:41 (PDT)
very informative site. Thanks
email@example.com Israel - Monday,
November 19, 2001 at 08:58:55 (PDT)
enjoyed your sight, although i am still looking for clinic or hopital that
specializes in this disorder for my niece. We live close to
Huntington/Charleston WV and all the doctors hear wnat to do is medicate. I feel
there may be more here than what local physicians can handle and I'm not
convinced that medication only is the awnser. Anyway It's a great web sight.
Wayne, WV USA - Monday, November 19, 2001 at 06:15:48 (PDT)
I believe you are totally out of line in your thinking about nephews
attendance at aunts wedding. It is the brides day, and no one elses..... if
nephews disturbance would cause her distress, then let the boy come to the
party. My sympathies go out to the bride. If shes not the type to understand his
sudden outbursts or can deal with them by ignoring them, then let the mother of
the tourettes boy respect her wishes. It is a tough call, but one which should
please the bride.
ft worth, tx USA - Wednesday, November 14, 2001 at 20:01:57 (PDT)
We have two children with comorbid traits of Tourette's and Asperger's.
Anyboby else out there?
The Jeffery Family
W. Sayville, NY USA - Wednesday, November 14, 2001 at 10:50:33 (PDT)
ich möchte alle Leidensgenossen ganz herzlich grüßen.
Ingolstadt, 85055 Germany - Saturday, November 10, 2001 at 06:27:55 (PDT)
JT 21 from Cincinnati had tourette syndrome for as long as I can
remeber.Ive never talked to anyone like myself. Want to be more educated.
Cincinnati, oh USA - Wednesday, November 07, 2001 at 08:33:34 (PDT)
Like many of the others that are diagnosed with TS, we went thru the route
of several visits to my 6 years old's pediatrician for allergies because he was
blinking excessively. We finally insisted on seeing an eye specialist. She too
thought that my son had allergies, but 2% of these cases are nueololical...maybe
Tourettes syndrome. I immediatley thought-no way-he doesnt yell
obscenities. How naive was I? After visiting the eye specialist a second time
she believed that yes, he did have TS. I freaked. It was like someone had socked
me in the stomache...I couldnt believe it. We were fortunate enought to get an
appointment with a neurologist just 5 days later. In the meantime, I started
surfing the web for information, or maybe I should say
"misinformation". I came upon the sites that gave worse case scenaries...until
I stumbled upon your site. It was a godsend. I could see my son in the
description that you gave. It didnt have to be all that bad. I was able to
go to the neurologist with an open mind, know what questions to ask, and to
accept the diagnosis of TS. My son is mild to moderate..it's kinda
"funny" looking back the past year and a half and realize that some of
the things that my son did was actual "tics"...he wasnt just trying to
drive us crazy! He is a very bright child-we have been told this since he has
been in preschool. He does not have ADHD or other associated symptoms. He just
tics. I tell everyone that he is a unique child just as all children are
unique-he just happens to tic. My son was just diagnosed 4 days ago. I attribute
my ability to deal with this calmly to your site. It gives a very good
understanding that each person with TS is "unique" in his/her own
way-like everyone else in the world. I know that I still have more to learn and
am taking each day as it comes. I know that my son could get worse, but then
again, he may not. Knowing that there is help out there certainly helps.
firstname.lastname@example.org USA - Saturday,
November 03, 2001 at 16:31:24 (PDT)
I have a 9 year old son with ADHD and Tourettes. I am looking for a
support group in Little Rock, AR. Please advise.
Little Rock, AR USA - Tuesday, October 30, 2001 at 21:11:12 (PDT)
I have a nine year old son Alex who has TS and OCD. He is a delightful
bright boy. Looking back we can see even at the age of two that he had
compultions. He has coped very well and to a degree has been very proud of his
touretts. However at this point in his life the tics have gotten larger and
interfer with some of the things he loves like soccer. His OCD also seems to be
causeing disruption in our family...with his siblings. He has a need to touch
everyone, and to always touch everyone last. Anyway so we are moving on to the
next phase: to medicate or not to medicate. We are very hesitant and fearful. We
are also trying to find the perfect neurologist who specializes in TS and who
understands the OCD component. If anyone has any suggestions or knows a great
doc on the east coast..we will go there. Thanks
Sarasota , fl USA - Tuesday, October 30, 2001 at 06:20:47 (PDT)
I have a seven year old, That was dianosed with Tourette Syndrome March of
2001. He also has ADHD and a Learning disability. My daughter is now having
symptons of tourette syndrome, She is nine years old. I want to thank-you for
this web page, it has helped a lot. If you or anybody can help with new
information, or just want to talk about tourette syndrome, e-mail me, we can
probally help each other by talking. Thanks a lot.
Martinsville, Va USA - Sunday, October 28, 2001 at 22:26:55 (PDT)
My son was diagnosed at the age of 10. He also has a history of partial
seizures. Fortunately, he was weened off oftegretol 6 months ago. He is
currently taking 2.5 milligams of orap at bedtime. I am conerned about the
longtermeffects. Do you have any information on orap? Your website has been very
lithonia, ga USA - Friday, October 26, 2001 at 10:33:12 (PDT)
My son has not been diagnosed as of yet, but he has shown signs of
Tourettes. He has had the eye blinking ever since he was little. He is now 10
years old. He also has a neck tic, it looks like he is stretching his neck, this
has just started in the past year. I never thought that there was anything
"clinically" wrong, I thought it was just a nervous tic kind of thing.
My son has also had problems with anger management. The school has basically
labelled him as a "problem child". He is a very mature, bright and
brilliant young boy. I guess I surfed here tonight because frankly, I was scared
shitless. When it was mentioned to me that my son may have TS I freaked out. I
wasn't really sure what it was or how to handle it. Thanks to you all I now
realize that it's nothing to get totally "freaked out" over. My son is
not a freak or a "problem child", he is simply put... just my run of
the mill, 10 year old son.
Canada - Thursday, October 25, 2001 at 15:39:51 (PDT)
My 12 year old son has been diagnosed with TS, OCD, but he really seems to
be having a problem with anger right now I guess thats why I was serfing yet
again. He has only recently been diagnosed and actually it was a teacher who
brought it to our attention, we always just figured his tics were just that,
mind you they had started getting more severe in the last several months but
I've never known anyone with TS. It is wonderful to see teachers still care, the
school has been great, but home life is a little stressful now. If anyone knows
how I feel email me, I'd be glad to chat. We have three wonderful children and
have been trying hard not to make this an issue in Matts life, we never want him
to feel any different, but his attitude right now is killer. Does this happen
with TS, the doctors say yes but they don't have to live it.I love my son dearly
but he's driving me crazy right now.
Shannonville, Ontario Canada - Wednesday, October 24, 2001 at 18:04:05 (PDT)
Thank you for this frank, clear, and very informative website on TS. My 7
yr old grandson will visit a neurologist for further testing and diagnosis this
Friday after his pediatrician prediagnosed him with TS a couple weeks back.
My daughter and son-in-law have been cramming info from the Web to learn all
they can about TS - I sent your web address to them this AM and suggested they
read it. Thank you for all the great info and the wonderful encouragement you've
provided - your site is fantastic!
Littleton, CO USA - Monday, October 22, 2001 at 12:12:42 (PDT)
I've just finished reading your entire website and e-mailed your address
to my daughter and son-in-law. Their 7 yr old son's pediatrician thinks he could
have TS - and this Friday he goes to the neurologist for further testing and
diagnosis. They have been so worried - no comforting words seem to help. I hope
when they read your wonderful site they will be filled with as much
encouragement and optism as I am now. They've been cramming as much knowledge
from the web, and my son-in-law is a fireman and paramedic - so he's read his
medical books - to learn as much as they can about TS. I've read some - but your
site puts the entire picture into a much better perspective for me and I hope it
will for them too. Thank you for such a frank, clear and encouraging discussion
Littleton, CO USA - Monday, October 22, 2001 at 12:06:57 (PDT)
I think that it is wonderful to see a website to support TS because not
many people know about it, like myself. I am doing a research on it because I
had to pick a profile for my college English class and my group picked this
subject. So I hit the library and got some books but I was curious if
there was any websites and whattya know? There is and I just wanted to say,
Bravo! and keep up the good work.
USA - Monday, October 22, 2001 at 09:29:36 (PDT)
29 years old- diagnosed at 16- still looking for solutions!
Atlanta, GA USA - Sunday, October 21, 2001 at 13:46:11 (PDT)
this websites sucks my kid doesnt have no dumb disease
kansis city, oklahoma USA - Thursday, October 18, 2001 at 08:49:11 (PDT)
My daughter was diagnosed with Tourette's Syndrome in September of this
year. After briefly researching via the net, I am struggling what to focus on. I
have learned that there are many resources that are for extreme TS. I want to
learn about MY daughter. who I believe is mild. If anyone can help direct me to
good information that best correlates with my daughter, please e-mail me. Thank
you and God bless.
Alyson is 9 this Saturday. She began blinking at age 4. She has allergies, and
we thought most of her symptoms were allergy related until this year. She
quietly hums a lot. She scrunches her nose and makes a "Pa" sound a
lot. She is beginning to blink again. She is not aggressive but is a bit
on the hyper side- but not disruptive at all. In fact, she is quite the
opposite. She is extremely loving. She loves God and others so very much. She is
being tested in school to develop an IEP- she struggles in Math but is excellent
in art, reading and writing. In kindergarten the teacher always had to let her
finish what she was doing and would have to many times leave without her for
bathroom breaks. In first grade, her teacher commented how creative she was. Her
coloring and drawing took precedence in school work and she often did not finish
other work. In second grade, she continued to be creative: drawing a quick
little picture next to each spelling word she was writing during a spelling
test. She also looked at questions differently than most people would look at
them. Now in third grade, she got in trouble for humming during a spelling test.
(Which she didn't know she was doing) This was the turning point where I
realized it was TS. It just clicked. I hope someone can relate and has
info for me. Thank you so much, and sorry so wordy!
Rice Lake, WI USA - Wednesday, October 17, 2001 at 20:46:46 (PDT)
I can't think you enough for providing this source of information. My 5
year old son starting have tics 4 months ago. I am so grateful to you and the
stories people have shared...I am so grateful.
Myrtle Beach, SC USA - Wednesday, October 17, 2001 at 17:59:51 (PDT)
My name is Cindy and I live in Long Island, New York. I am 26 years old
and I have been living with Tourettes for about 20 years. Not to minimize my
tics, or any of the effects they might have on my mind, body or soul, but, it
has gotton to the point that I don't even notice anymore. Its just a part of who
I am. I haven't taken any medication since I was about 20 years old. (bad
experiance). Any way, I just wanted to introduce myself to you. I have many
stories and experiences to share. Whether they are a learning experiance to
others, or just a calm familiarality, I am always willing to talk about them. I
am sure that my life would be different if I didn't have Tourette's, but, that
can be said about anything in a persons life. If i didn't have acne as a kid, if
i didn't go the college that i went to....you know what I mean. It's just one
more part of me that make's up who I am, the person that I want to be and the
life that I want to live. That's just my outlook on it. Anyway, thanks for
posting a great website! I have been here before, and I do intend to come back!
Huntington, NY USA - Tuesday, October 16, 2001 at 21:35:51 (PDT)
What an encouragement to read about all these wonderful and extra special
children. Also good to know 'we are not alone'. Our beautiful 'tomboy' was
diagnosed several months ago after a year of classic TS symptoms. Apart from
usual waxing and waning tics which we are only getting used to seeing and then
not seeing, our Dr also mentioned that TS sufferers can also have digestive
problems. It's bad enough for our lovely girl to cope socially with some of her
tics but she has the added embarassment of breaking very smelly wind which
strange as it may seem occurs with the current bout of tics and mood swings. As
yet she is on no medication as we are considering things carefully but are
trying to gather as much info as possible on alternative diets, therapy etc.
Does ANYONE have any info regarding digestive issues as related to TS or indeed
any other info on how they may have used diet or vitamin supplement as therapy?
Imagine if we all put our beautiful, bright and increbidly unique TS children in
one big room - what a wonderful place it would be. All our thanks to everyone
honest enough to share on this great site.
Paul & Carolyn Kimbrey
Worcester UK - Tuesday, October 16, 2001 at 14:03:27 (PDT)
I have two excellent boy's, 13 years old and 8 years old. They both have
TS. They have to clap, tap elbows, make shrill noises, and so on. I will not put
them on medication. I sat them down and talked to them and told them of ways to
try to controll it. I also go to their schools every year and talk to their
teachers and let them know what is going on so they will understand. Both of my
children are doing wonderful. My 13 year old has all A's and B's and my 8 year
old has all A's, B's and C's. I do down anyone who puts their children on
medication though. Please don't think I do. I don't choose to put mine on it
because I don't want them thinking they are "sick" or something is
wrong with them. There are 8 people in my family who all have TS. I am one of
them as well. I hope this will help any or all of you. It is the Tourette
Syndrome Association. You can write and get all kinds of information, pamplets,
letters, Doctor's statements, etc, at:
WA STATE TSA
11316 20th Ave. NE
Seattle, WA 98125
Bristol, Va USA - Tuesday, October 16, 2001 at 06:57:17 (PDT)
Help for parents and childern is rare in South Africa - nobody hardly
knows it and the teachers are uneducated. This cause trauma for the
children. To find a doctor who is updated with knowledge of medication for this
illness is a problem. My 17 year old boy is now 5 years on Fluanxol and Tofranil.
Can this still be the only or the best??
Please help us!
Witbank South Africa - Thursday, October 11, 2001 at 23:46:14 (PDT)
My 6 year old boy was diagnosed with TS today, although we have been watching and expecting the diagnosis. Of course, I'm out searching the web to look for help. This is great. Bless You.
Round Rock, TX USA - Thursday, October 11, 2001 at 14:06:09 (PDT)
this is a great site and i look at it all the time !!
my mum cant stand it but i dont care because i lov it !!!
Brisbabe Australia - Monday, October 08, 2001 at 02:06:19 (PDT)
This is my second time to sign in. My eldest son made all A's and B;s on his mid-term report recently. He is in Honors math and science. At 13 he is developing into a fine young man aware of his TS/OCD, but not ashamed of it. My twins, age 11, are doing well; one is on the Honor Roll and the other is struggling a bit. Both medicated, I have to remind them over and over that TS/OCD is a little thing and that their life, however, is a BIG thing. Thanks for this site.
primm springs, tn USA - Tuesday, October 02, 2001 at 08:03:00 (PDT)
is there anyone is who developed ts as an adult? mine started at 25, i'm now 43. 3 yrs ago i was no longer able to surpress the motor tics during the day, and have since added the vocal tics.
kerry b. (male)
portland, or USA - Friday, September 28, 2001 at 21:13:59 (PDT)
Nice Site. I Am On The Utah TSA Board And Just Happened To Browse By Here. I Learned A Bit More About TS, And Enjoyed Reading Other Entries In The Guest Book. Good Luck.
email@example.com, UT USA - Friday, September 28, 2001 at 07:29:04 (PDT)
I have a 13 year old son and has been diagnosed with TS for a couple of years now and I wanted to find out how to get the proper litature on
TS. I have asked to get all of this so I will know how to help my
child. He is going through a depression or is it just what teens go
through. I feel as though I have not been adequately helped in this
area. I feel he and I as partners in this should know what is needed and the way to deal with
it. I just feel as though we need help. I just worry about the
depression. It is getting worse and I feel I am letting him down by not knowing what to
do. Thanks for listening.
Cordell, Ok USA - Saturday, September 22, 2001 at 16:32:57 (PDT)
We are in the observational stages with our son, who is 6 years old. He has been eye blinking/eye rolling for a year now and just recently started sniffing and making noises as he sniffs. We, like many others that I have read about, have visited the eye doctor and the allergist. It is still confusing for us, because our son does have allergies for which he has tested positive for and we wonder if this is allergy related. We have also noticed hand sniffing. Your website has been the only site so far that has conveyed a feeling of hope. My husband and I needed to hear about the importance of a positive outlook and the effect of a parents attitude on the child's outlook on everything. Our son's signs appear to be mild in comparison to what I have read about--your site has been very helpful and uplifting. Thank you for sharing your experiences!
Cincinnati, OH USA - Thursday, September 20, 2001 at 19:27:59 (PDT)
YESTERDAY WE GOT THE NEWS FROM THE DOCTOR AND AS THE FATHER OF A NINE YEAR OLD MY ONLY CHILD I FELT MY HOLE WORLD WAS TURNED UPSIDE DOWN UNTIL I FOUND THIS SITE THANK EVERYONE FOR THE COMMENTS AND PRAY FOR ME & EVERYONE ELSE THAT HAS AND THOSE WHO HAVEN'T YET EXPERINCED TS WITH A LOVED ONE.
BROUSSARD, LA USA - Wednesday, September 19, 2001 at 08:46:37 (PDT)
My niece has been diagnosed with TS and I was surfing all the sites and came cross yours. There are so many links, but I really learned much from yours. Thank you and keep up the good work.
ZEssay2aol.com USA - Tuesday, September 18, 2001 at 21:23:42 (PDT)
My son was dicnosed with TS today. His major tic is grunting. The thing that took me to the doctor with him was that a teacher had punished him for it and I was mad so I called the school and told the nurce that it was somthing he could not control and she sugested TS. The doctor said that it can also be the cause of his hyperactiveaty and that we may want to medacate him just a little to help control that part of his TS. I am all new to this so I am sure I will be learning a lot in the near furture so that we can deside the best action for him.
Harpswell, me USA - Tuesday, September 18, 2001 at 16:18:09 (PDT)
Your site is very helpful. I am a grandma with twin grandchildren. My grandson had trouble with attention in kindergarten and is now in first grade and taking Ritalin. He recently started a cough and making little noises at bedtime. My granddaughter has had various tics since she was 3. She has not been diagnosed but we have suspected that she has TS for a long time. She is having lots of trouble now in first grade and has an appointment this week to see if she needs to take Ritalin, also. Thanks for your information. I printed some of it out to take o the Dr. appointment.
Lafayette, IN USA - Monday, September 17, 2001 at 19:42:24 (PDT)
i know how you feel.
lexingtion, sc USA - Monday, September 17, 2001 at 08:45:45 (PDT)
As a mother of a son diagnosed with Tourette Syndrome, I found this website to contain information I have been searching for. My son did a project for his class 7 years ago when he was first diagnosed. The information I found back then was excellent and have not been able to find the information since. I have been looking for information on what experiences teachers need to know. This website filled the need for the information I have been searching for. Thank You for taking the time to help inform new members.
Easthampton, Ma USA - Sunday, September 16, 2001 at 08:00:24 (PDT)
My 9 year old son has not yet been diagnosed with Tourette's but will be seeing a neurologist. He started ticking and making little noises last year. I thought is was Tourette's right away but was never sure. School is starting and the ticking has increased. Last night was the worst as he said he felt like banging his head. Other tics include blinking, sniffing and clearing his throat though not all at the same time, thankfully.
I have been in a controlled panic for a year now, no-one believing what I thought including my husband.
This little note to tell you that although I have visited many web sites, yours has given me hope and energy to deal with this in a more positive way. I even smiled many times when reading about this syndrome which has never happened. Again, thank-you.
firstname.lastname@example.org USA - Saturday, September 01, 2001 at 02:10:51 (PDT)
46 year old who has a history of what i believe was severe OCD behavior up to age 20. A few habits remain but most gone. Performing said compulsions frequently associated with religious guilt/endeavor. Anyone out there familiar with similar motivations for OCD/tourettes behavior?
Birmingham, AL USA - Monday, August 27, 2001 at 20:34:10 (PDT)
Jackie, I just read your posting. I am not an expert on TS but nothing I have read about TS describes the joint soreness (except for neck and shoulders from shrugging and tensing) that you describe, The eye blinking sure fits but I'm not sure about the rest. You don't mention your daughter's age, but has her doctor tested her for rheumatoid arthritis or diabetes or anything else? Is there anything like that in your family history? Is TS in your family? Maybe these are just atypical symptoms of TS. I wish I knew more to tell you. Let me know what you find out.
Waterford, MI USA - Monday, August 27, 2001 at 17:39:22 (PDT)
I just discovered this website yesterday. I wish I had seen it months ago. Our 8 year old son, Chris was diagnosed in March 2001. All the websites I found were involved with worst-case scenarios...all the while saying, "Think positive! Have a sense of humor!" Like THAT was possible!Coming across this site was just what I needed with school starting this morning! Since the beginning, Chris has handled this better than I have. (I didn't let him know it) I think he was actually a little relieved to find out that there was a name for the feelings (tics) he was trying to control, but couldn't, and that it was absolutely okay to do them. Now I feel we are both on the same page. His friends just accept that "Chris makes 'nervous noises'." (That's his explanation). But I was dreading the first time someone teased him. Finally it happened a few days ago. A neighbor kid said, "Man, you sound like a dork when you make those noises." Chris grinned and laughingly said, "Yeah, I know." WOW! Just what I was praying and hoping his response would sound like! (Although it wouldn't have hurt my feelings any to pound that little MONSTER into pulp!)I know that Chris will have to handle these things on his own...what a relief to hear he's up to the challenge! Now, with this site for MY sanity, we are doing great! His first day at school was just fine, he wasn't even ticcing when he got home (always a sure sign that he was suppressing them all day in school)His tics were mild over the summer and I was afraid they would be much worse going back to school. But, he's taking it in stride and doesn't seem to be stressed out by the "newness" of 3rd grade. I have one question to throw out there though. Chris is unreasonably afraid of going to bed or being alone upstairs. I've read that TS sometimes comes with unreasonable fears or obsessions and I wonder if anyone else has a problem like this. Thanks to all of you for sharing your challenges. And to all you other moms out there, remember this when it seems that the whole world is upside down, "mom" upside down is "wow"! Hang in there!
Waterford, MI USA - Monday, August 27, 2001 at 17:28:11 (PDT)
Could you please email me. I feel my daughter has the ts because of her eye blinking and her the problem about her body. She said her neck shoulders, arms, elbow, knees, and her ankles. She flexes and stretch all the time. But she complains of joint soreness. she calls it soreness instead of pain. she just told me this last night on 8/27/2001 will share some info with me.
Winnfield, LA USA - Monday, August 27, 2001 at 08:26:20 (PDT)
Just was looking through related websites. I am doing a class project for a college class on Presentation Skills, and am doing an informational speech on Tourettes. I am finding everything so far so informational and the more you learn, the less ignorant you become to other peoples lives. Thank you for you website. It has been
muncie, in USA - Sunday, August 19, 2001 at 16:15:30 (PDT)
I was feeling pretty low and trying to keep all of my despair inside in order to put on a strong front for my 6 year old little boy. I thought I should educate myself about his TS dx but everything I read said he was going to grow up, get worse and either commit suicide or kill someone else with antisocial aggressive behavior. Try to put on a happy face after reading that and thinking of your beautiful, sweet innocent little cherub. Then I stopped reading anything altogether. My Mother had to censor shows that people would tell me to watch or articles that others would tell me to read, because they would in all likelihood make my depression and fears worse. I dont know how I came across your site, but thank you and god for this information. You can not believe how much this one site has helped me and my son. You have given me hope. That's what it is, hope for the hopeless. God bless you and your efforts to help people whom you dont even know, and who desperately need someone like you.
Fairway, KS USA - Thursday, August 16, 2001 at 08:15:06 (PDT)
I'm hoping that, by absorbing the refreshing and pragmatic information provided in this site/forum, my wife and I can learn to just get on with life and enjoy bringing up our son, who, apart from the odd 'tic', is a bright, intelligent, athletic and (most importantly) happy boy.
Sydney, NSW Australia - Tuesday, August 14, 2001 at 07:05:47 (PDT)
I have found this to be such a wonderful site as a mental health professional who works with children with Tourette Syndrome and their families. It is so helpful to be able to guide parents to this site after they get the TS diagnosis. Thanks for all of your hard work.
Marian Moldan, RCSW
Miller Place, NY USA - Saturday, August 11, 2001 at 19:25:53 (PDT)
I have been web surfing for information on tourette's, as a friend's daughter has just been diagnosed... it is great to find such a postive, intelligent site, and I love the feisty campaign against the leechy Dr Laura! Thanks for putting the time in to help people out like this. Oh, and the bit at the bottom which says you are 'Just a Mom'? No way!!!
Bermuda - Saturday, August 11, 2001 at 13:07:18 (PDT)
My 10 year-old brother was recently diagnosed with tourette syndrome. Looking at sites like this assure me that this is defintiley what he has, and that we can help him live with it. Thanks you so much!
Romeo, MI USA - Thursday, August 09, 2001 at 11:00:20 (PDT)
your web-site has been very helpfull on my research on ts. This site has giving me hope that my younger 8 year old brother will be able to live a active and normal life with
THANKS SO MUCH,
columbiana, oh USA - Thursday, August 02, 2001 at 05:22:37 (PDT)
I just want to say that I have found this website very helpful in my research.
USA - Wednesday, August 01, 2001 at 08:12:56 (PDT)
I found you website and was interested in it. I'm 25 and I've had TS since I was 4, but only been diagnosed for 5 years. Main symptoms of my desease include multiple vocal and motor tics, but vocal tics are predominant. I've been treated with different drugs:haloperidol, sulpirid etc. Treatment by drugs was supplemented with psychotherapy, phisiotherapy. But the effect of treatment was unstable.
Despite my desease I studied in Medical University, Tomsk, Siberia, (medico-biological department) and I was graduated with diploma with honour. Now I am a 1-st year PhD sudent at State Research Center of Virology and Biotechnology "Vector".
Symptoms of my disease don't reduce, I haven't remission for a long time.There are now special neurological centers in Russia, wich can help people, suffering TS. So I should be grateful if you send me any information about treatment and special center for patient with TS.
I loook forward to hearing from you.
email@example.com USA - Monday, July 30, 2001 at 22:14:31 (PDT)
My 6 year old son has had a few signs of tics in the last 6 months and I am glad in searching for info I have found your site. I want nothing more but the education to help him and you have helped quite a bit.
Holbrook, ny USA - Thursday, July 26, 2001 at 21:53:47 (PDT)
I am 41 years old and have had facial tics since I was about 6 years old. I have 5 children and my sons seem to show signs of TS also, I have 2 sons. My daughters don't seem to have any of the tics. I have gone to various doctors but they tend to ignore my worries. I am a banker and often have to make public speeches, I get so nervous that I blink like crazy and feel everyone starring at me. It has been very hard dealing with TS especially since my family wasn't informed and thought I was doing the tics on purpose. My mother would get so mad and tell me to stop and it would take every ounce of control to try to hide the tics and stop them..I would often run to a room where I was alone and let myself go. The tics now come like an allergy. I have watched my sons and they twitch more at certain times. I try to be encouraging and give them extra attention until the tics subside. Lots of love makes them almost disappear. My TS was inherited. My father twitched his shoulders but died when I was very young so I never saw anyone else with the problems. I pray for all who have had to suffer from ridicule or ignorance of TS and are very thankful for websites that tell the truth.
firstname.lastname@example.org, IL USA - Wednesday, July 25, 2001 at 16:08:14 (PDT)
Zijn hier ook nederlandse ouders aanwezig met kinderen die tourette hebben?
Please, I want to have some information about medication you use in the USA. Maybe it's differtent as in Holland and i want to discusse this with our doctor.
email@example.com NL - Tuesday, July 24, 2001 at 06:38:11 (PDT)
Thanks so much for taking the time to set up and update this website. When I'm feeling particularly at wits end, I find comfort in knowing others have been there too! My son, 11, has TS. He has shown symptoms since about 6 but, it hasn't been until the past two years that the symptoms have progresses to a state where they are both quite noticable and audible. At times he seems to deal with it quite well but, other times it really is a stress. I pray for a miracle but, reality hits and I'm learning to pray for patience.
firstname.lastname@example.org Canada - Sunday, July 22, 2001 at 20:05:22 (PDT)
Excellent commentary on the Dr. Laura issue. We who have TS must struggle to make society understand who we are and what we have. This site is an excellent start.
Azusa, CA USA - Wednesday, July 18, 2001 at 21:04:39 (PDT)
My eleven year old son was diagnosed with octurnal migraines and TS. He was suffering 4-5 severe headaches a week, and facial and eye tics. The neurologist prescribed Periactin, which did not work. He doubled the dosage, but neither the headaches nor the tics up. My son gained 15 pounds in four months, and went through a personality change with a lot of anger and mood swings. We recently began taking him to a chiropractor for the headaches. He was able to ease his pain, so we gradually took our son off the Periactin. He now has only 1-2 mild headaches a week. We are thrilled with that, but the tics are as bad as ever. We are really concerned about his starting middle school next month. Children can be so cruel; we don't want him to be teased. The doctor wants to try Depakote next, but I have heard horror stories about that drug. His eye blinking is almost constant, we really want to suppress it if possible. Is there some alternative route we could take, maybe dietary or herbal remedies? Please let me know what has worked for you. He needs help, but we really want to try to stay away from drugs this time. I would appreciate any help or suggestions. Thanks.
Murray, KY USA - Wednesday, July 18, 2001 at 12:23:13 (PDT)
Thanks so much for this site. I was able to go to my son's neurologist exam with a calm attitude. Yes, he has TS, but it is mild, he doesn't need meds, and he can keep taking Ritalin for his ADD. You laid my fears to rest, so I could help my son with his. Thanks!
USA - Wednesday, July 18, 2001 at 09:56:45 (PDT)
My son was diagnosed with TS just yesterday. At the moment I am aching and red eyed. I dearly want to see the possitives in this syndrome and use them to the fullest.. My son is only 3 years of age so we have a long time ahead of us to learn how to best deal with this thing they call TS. I am eager to talk to parent all over the world that have children with Tourette's.. I hope I get a reply soon.
email@example.com, VIC AUS - Tuesday, July 17, 2001 at 20:21:54 (PDT)
I'm very happy to know other people feel the same way I do. My 12 yr old son has tics and ocd he's been on numerous medications but the tics seem to get worse. The Dr. wants me to put him on celexa just to calm his nerves. I'm worried on what to do, but I've noticed his tics get worse with nervousness or when he gets anxious. I've noticed when he's at school he seems to be worse,now that it's summer his tics seem to be easing off. If anyone has any advice please e-mail me at any time. I would like to know what other people would do.
Cleveland, Oh USA - Tuesday, July 17, 2001 at 20:12:01 (PDT)
I want to address the comments made by a few of the psoters here, concerning Dr. Laura. It seems some people believe that all her opposers are anti-Semites. WRONG! My father-in-law, husband and child all have TS. All dislike Dr. Laura. And all are JEWISH! There are MANY in the Jewish community who strongly dislike this woman and the negative image of the Jewish people she insists on displaying with her ignorance and intolerance.
firstname.lastname@example.org USA - Saturday, July 14, 2001 at 21:11:19 (PDT)
My father-in-law, husband and five year old daughter all have TS. My daughter also had PDD and SID along with her TS, and is responding very well to physical, speech and occupational therapies.
Portland, OR USA - Saturday, July 14, 2001 at 20:55:42 (PDT)
my grandson 10 has ts and has bad tics, the new doctor added ritalin to haldol. he was unable to walk. my daughter stopped the ritalin. what medication is better. it is amazing how hard it is to find a doctor in ny with knowledge of ts. your site is wonderful. can I do anything to help?
anna di gangi
east northport, ny USA - Saturday, July 14, 2001 at 13:32:17 (PDT)
My psychology professor asked us to check this site out for an assignment on Tourette's Syndrome. The "stories" link was very interesting and moving. Also I think the repungnant Dr. Laura has once again shown herself to be the money grubbing charlatan she's always been. Great site. Thank You.
Champaign, IL USA - Saturday, July 14, 2001 at 10:12:26 (PDT)
I strongly suspect that my 9 year old son has TS. We have made an appointment with a doctor, however, must wait three months to get to see him. My son is not displaying any signs of ADHD, OCD, bipolar or any other possible comorbid disorders associated with TS. Your site has been very informative and has eased much of my anxiety about TS. About a year ago, I jokingly said to my husband that our son probably has Tourette syndrome. As time went on, I realized that he may very well have TS. Also, in retrospect, I've come to believe that he was probably symptomatic when he was three or four. We had him to several doctors for allergy testing due to constant sniffing and coughing, which we misjudged for allergy symptons. Thank you for taking the time to create such an informative web site.
email@example.com USA - Wednesday, July 11, 2001 at 12:13:56 (PDT)
I was happy to find this website. I have a 9yr. old with Tourettes. Like you, I have found that his tics seem to be mild and not much of a problem, however the related ADHD seems to be more of a problem with school performance etc... Reading seems to be the most problematic. I will definitely pass this website on to any others I can, thanks for your time and info!!
firstname.lastname@example.org USA - Monday, July 09, 2001 at 21:02:43 (PDT)
My son in fourteen. Diagnosed with ADHD at eight and with TS at thirteen. He was on ritalin for three years and now on Orap. I consider his tics as mild. He, his father and I have all struggled with his "condition". I remember asking the pediatrician when he was three years old, "is this type of hyperactive behavior, normal?" He never stops. Of cource the doctor gave a benign answer. I have read that many children who have ADHD develop TS. As I have read this site, I realize that it is true. I cry as I read the messages in your guestbook from other parents who have experienced what I have. He has always struggled in school. He has always hated to read. He is now in the federal program, "504", which allows him a little extra time to turn in homework and extra time to take tests, if he needs it. This has helped him so much. Ilook forwad to reading more on your site. Thank you so much. Also,did you know that Dr. Laura is a Dr.of physiology and not psychology? That makes her a real expert, huh?
Garland, tx USA - Tuesday, July 03, 2001 at 20:57:32 (PDT)
I HAVE A 10 YEAR OLD SON AND HE HAS BEEN DIAGNOSED WITH ADHD SINCE THE AGE OF 5. HE HAS JUST PASSED THE 4TH GRADE ABD IT WAS A HARD YEAR. HIS TEACHER WAS VERY MEAN TO HIM. FIRST, SHE SAID HE HAD TOURETTES AND SHE WANTED TO PUT HIM IN SPECIAL ED CLASS. NOTHING WRONG IN THAT BUT, WHEN I HAD HIS DR. CHECK HIM OUT, SHE WAS FURIOUS WITH ME. I FINALLY GOT THIS MATTER IN HAND. HE PASSED WITH ALL B'S. I HOPE HIS YEAR IN THE 5TH GRADE IS MORE EXCITING. THANK U
MARION, OH USA - Sunday, July 01, 2001 at 13:56:49 (PDT)
You have a lot of time on your hands dont you!!!
nsw Australia - Sunday, July 01, 2001 at 07:54:58 (PDT)
Hi & thanks for adding this site to the foray. I know how much work it takes to set up a web site & keep it going, I appreciate the work you have put into this site.
I am a mother of three boys 7, 12, & 14. We all have TS & Bipolar disorder. They have OCD & ADHD besides. Seven years ago I too went reeling into that never never land of shock & disbelief when my oldest son was diagnosed. Thinking "Tourette's Syndrome" oh no, what will become of him, who will want to marry him, will he have to live with us for his whole life...? Well, you get the idea. Our family has gotten to the point of "TS, so what!" We have "tics of the Month" and we joke about a lot of the symptoms. Whenever I tell them to stop doing something the pat answer is "It"s a tic", whether it is or not. Kids, you gotta love 'em!
We don't medicate for the tics per say but the bipolar and OCD needs to be medicated in order to keep the kids functioning. Tics are nothing. I had them as a child and didn't know it. My mother told me and every one else that I had allergies! Love it! No stigma there, didn't know I was "disabled" (as some view it) until my kids were diagnosed.
God Bless everyone. Live, love & be kind to yourself & to others, it makes life so much more enjoyable! Carol
email@example.com, ND USA - Thursday, June 28, 2001 at 10:25:45 (PDT)
I have a friend with tourette syndrom and i just needed to know what it was all about. this site has made this condition a lot more clear to me and all the info was very helpful. Thanks a bunch!!
USA - Tuesday, June 26, 2001 at 23:04:39 (PDT)
A mother of 5 with ADHD,tourettes,Obsessive Compulsive Disorder and immune defficiency the six one by a different father what a change. They need to into issues with domestic violence linked with these disorders. SEnd laughs please.
tired out mom
Maple Lake, MN USA - Sunday, June 24, 2001 at 07:13:47 (PDT)
Howdy all ! I am the proud wife of and mother of some very special TS/OCDers. They were diagnosed 3 years ago within one week of each other. What a wild ride! On on hand I have a husband who was diagnosed to late to undo the negative labels he suffered from during childhood and adolescence, and on the other I have a "clean slate" of a young TS child who posseses all the gifts a child needs for a tremendous life. He is almost 6 now and carries no negative self view of himself or his Dad. I work VERY hard to laugh and laugh. I work very hard to redirect negative behaviors so they appear as "requests" that I need from them rather than behaviors that they have to stop because they are "wrong". Because our son's symptoms make it impossible for him to be in large groups of kids for more than a couple hours without being viewed as "bad", we have choosen to homeschool him. This is proving to be a great sucess ! His short outside classes of dance, music, and acting allow him to have the social experiences that he needs and loves without overloading his particular neurological tolerences, so to speak. He is an open, happy, brilliant, kind, and socially fearless young boy.
I just wanted to share some of my positive feelings about living with, and loving my special
Pittsburgh, PA USA - Saturday, June 23, 2001 at 21:22:03 (PDT)
Thank's for the information. I trust it will be of great help in the near future. Cj
Houston, TX. USA - Saturday, June 23, 2001 at 16:36:49 (PDT)
I have a 15yr old son whho has never been dignoised persay but his father was when he was a child. Neither of them have it as bad as some. Greg mky son makes the noises in his throat blinks his eyes and knods his head he says he doesnt realize he's doing it. A little over a year ago I took him to the doctor for this they took blood tests refered us to other who gave me forms for his teachers to fill out I got one reply out of seven . Ineed some advice on where to go from here he is getting worse I feel . could you please help. thanks
Marysville, ca USA - Wednesday, June 20, 2001 at 14:38:13 (PDT)
I am never shocked at anything Dr Laura says or does...she has always felt that her opinions were fact...I have yet to see her say "In my opinion"...she always states her views as fact...but she has surprised me with this ridiculous statement directed at an obviously handicapped child...How dare she be so insensitive as to make this comment and then have to much pride to apologize for her own ignorance...I have never been a fan of hers...but now I am even less a fan...this woman is truly disgusting.
ANGELIZD@aol.com USA - Wednesday, June 20, 2001 at 14:10:23 (PDT)
Just wanted to thank you for providing some much-needed guidance in the sea of medical advice/research/opinions etc. I really appreciate the help!!
Toronto, ON Canada - Monday, June 18, 2001 at 14:43:49 (PDT)
I have a 13 year old son who has been diagnosed with Tourette since he was 6 years old. He has vocal and motor tics that of course wax and wane.He also exhibits co-existing conditions of ADD, OCD, rage. He has been on just about every medicine in the book. Though we sometimes were able to control tics, ADD remains severe. We have tried Ritalin and Concerta without much success. I finally mentioned to our Dr. that I wondered if we were looking at cognitive dulling from some of the tic suppresant meds--maybe not so much ADD. So after many years and many meds, we are in the processing of weaning him from medications. So far, all has gone well, but it's hard to tell since it is summer and we don't have the major stres of school to contend with. Also, he may be in a waning period so it makes it even more difficult to know what is going on. I only know that Tourette is an enignmatic and tough diagnoses to cope with because there are no easy answers or quick fixes. I am a K-1 multiage teacher and from that standpoint I have become more aware that many behaviors children exhibit may be evident because of their "hard wiring" or neurological makeup. But as a parent, it has been a continuous trial. Here's hoping we find out that my son can cope without some of the "cognitive cocktail" I have given to him for so long.
St.Louis, Mo. USA - Sunday, June 17, 2001 at 06:15:01 (PDT)
I have just heard about this ts diagnosis. I think my son may suffer from this. Now i have information about it, it really does sound like my son, who is 11 and suffered from this for about 4 years now if not longer and is getting worse. I can now take some information to my gp and see if my son can now be helped, as it is affecting his school work.
leeds, uk - Sunday, June 17, 2001 at 04:23:21 (PDT)
What a bunch of hypocrites many of you seem to be. It would be hard to find anyone who has helped as many people and families as Dr. Laura. It would be hard to find anyone who has personally helped as many children with disabilites as Dr. Laura's foundation. And yet, she makes one gaff and many of you are all too eager to pounce on her. The reason is NOT because of what she said on her show about Tourettes, you know. The reason for the vitriole shown toward her is because of her Jewish Faith (Orthodox). Why can't you have the guts to say it? She is against abortion, against homosexual marriage, so the popular media and organized hate groups use any opportunity to slam her. Where was the outcry when pro-abortion Al Gore made a malicious offhand statement about Down's Syndrome kids a few years ago, huh? This is what I so dislike about the Left. They are willing to use innocent Tourette's kids as a cowardly way to express their anti-Orthodox Jewish beliefs.
firstname.lastname@example.org, CA USA - Saturday, June 16, 2001 at 20:47:21 (PDT)
Another hatchet job on Dr. Laura. It's not the "Tourettes" deal that upsets folks. That's just a cover to attack her. The real problem is she is Jewish and expresses her Jewish beliefs (against abortion, against homosexual marriage) and has acquired a large following doing this. BTW, I am a former occupational therapist who did work for a large public school system and actually have worked witn Tourette's children and young adults (and their families.) The advice that a bride has the choice to invite whom she pleases to a wedding, and that sometimes Tourette's symptoms can be a huge disruption was not out of line. Also for your information, physiology is a medical discipline. I left the public school system because of the low pay and the inability of the public system to provide effective treatment to many kids.
email@example.com, SD USA - Saturday, June 16, 2001 at 17:33:31 (PDT)
After listening to Dr.Laura for many years and knowing how she promotes the welfare of children first, it's surprising
to me that she would take a stand that would so obviously devistate a child. As someone who was kept off wedding guest lists becauseof a disability (not TS), I know what turmoil THAT can cause in a family--more so if I had been invited to the event. And, if it's true that MOZART might have experienced some form of TS, I imagine he would have been kept out of most weddings--but he could have mailed in his masterpieces!
Long Beach, CA USA - Thursday, June 14, 2001 at 21:54:20 (PDT)
I am, once again, appalled by Dr. Laura's insensitivity and lack of integrity as a "scientist". I have known only two persons with TS, only one of whom had coprolalia. But both have suffered physically and socially, and both have participated in full church activities - including weddings. Her statement on marriage (in her publication) was much nearer to my understanding of family, religious celebrations, etc. Too bad her "off-the-cuff" comments are so revealing of her true sentiments.
Rev. Robin Lostetter
USA - Thursday, June 14, 2001 at 18:51:54 (PDT)
I'd like to step away for a moment from the well-deserved public flogging Dr. Laura is receiving and address the comments posted by "David" from Chapel Hill. David insists that since Dr. Laura has apologized, then the matter of her insensitivity and ignorance towards sufferers of Tourette's syndrome should now be closed and we can all move on. Well, David, let's address your position point by point:
1)Allow me to pose this question to you: if you were to learn that your wife, girlfriend was sleeping with the entire male population of the state of Wisconsin, would an apology make up for the endless amounts of psychological trauma and humiliation you would more than likely suffer? Of course not. So, why then, if she presented a viewpoint that was based on false assumptions (the fact that all sufferers of TS routinely spew obsenities is one such false assumption she made) and prejudicial, bigoted beliefs towards what you call "disease of the week" sufferers should we gladly accept an apology from her, especially one as half-assed as hers?
2)Speaking of apologies: to date, her spokespersons, not Dr. Laura herself, have issued an apology on her website, which has since been withdrawn. She has failed to address her inappropriate behavior and attitude in the one medium which she does most of her damage, and that's in her radio show.
3)Assuming sufferers of TS want to play Gestapo fails to answer what protesters are seeking: a recant of her commentary. And yes, writing to her sponsors is an excellent, albeit damaging method of making your point. Sponsors in the radio medium are the very lifeline (read: $$$$) of a radio show. Especially if you have big-named sponsors like the ones she has. If this action does prove successful, it will not be for vindictive purposes. It sends a message that a public figure such as Dr. Laura must be held accountable to the same "morals" and "standards" that she herself verbally sledgehammers home to all her listeners.
4)Look, I'm all for presenting a different point of view. We all should be subjected to a point of view we don't agree with. I'm a natural-born skeptic, and I've learned a long time ago that everything should be questioned. If someone were to tell me that an economic downslide can be reversed if we all started cultivating turnips in our backyards, then I would want evidence presented to me in a clear, consice manner. Dr. Laura has made her mark by presenting her viewpoints in a manner that suggest ignorance, assumptions, ancient generalizations and stereotypes. I mean, if she's telling a listener that their cure for depression is a swift kick in the ass, then that advise fails to diagnose what this listener's problem may be. Sure, I'll start growing turnips if it meant this country isn't going to go through a recession. But what if my turnips go bad? What if we have a bad turnip crop?
5)I think you and I both know that just because someone calls into a radio show for advice, we're not going to be getting the best advice. The caller in question was asking what should she do about this situation, and instead got a hysterical, horribly inaccurate lecture on why TS sufferers should be locked up for their own good (or something like that).
6)Last, but not least...once again, someone has proven that the IQ levels of the citizens and residents of Chapel Hill, NC is not as high as they blatantly love to brag about. David, the reason why I write this is because I am APPALLED at how silly and moronic your opinion is. Accept the fact that people refuse to accept opinions, right or wrong, that they don't agree with, but don't assume that an apology makes amends for the damage done. If this were true, then all Hitler had to do was say "oops, sorry, didn't really mean to kill all those jews", and all would have been right.
Raleigh, NC USA - Thursday, June 14, 2001 at 07:55:41 (PDT)
It's a great site, very supporting.
I suffered TS since I was 14 (I am now 25). I would class my case as quite a severe one. I have found "my little world" where my friends and colleagues enjoy my company. I was good at school and in the university. I have a good job. I am happily married. But my twiches (all sorts of them) have progressively increased since 3 or 4 years now. My doctor has prescribed Pimozid to me, which is not available in the local (3rd world) pharmacies. And I do wish to try this medicine. Any chance someone could ship out a packet to me - copy of doctor's prescription available. Any e-mails will be welcome. Thank you. Ruslan
Baku Azerbaijan - Thursday, June 14, 2001 at 01:51:57 (PDT)
Thank you for standing up to that heinous shrew Dr. Laura!
I was rather uninformed about Tourette's before I read your page, and was unaware that coprolalia is not the most common symptom. I think even if the child did have coprolalia, he should be allowed to take some part in the festivities - it's family, after all. But thank you for standing up to Dr. Laura, and for putting this information out on the internet. I feel I have learned something important from your site.
Oh, and as far as being "tolerant" of Dr. Laura's "mistake" - as far as I'm concerned it was not a mistake, but just another example of her wanton cruelty to anyone who doesn't fit into her mold of "morality." I think she needs to take a long walk off a short pier.
Austin, TX USA - Wednesday, June 13, 2001 at 10:54:42 (PDT)
hello. I was just reading on your story with the Dr.Laura thing.
Although i do not condone her actions,i do applaud her for doing the right thing,
in this case,admitting that she was wrong. What irrates me is that it is not good enough
for some people. the american "name your disorder here" society is not happy until
all their ransom demands are met.You guys demand tolerance in our society for a
certain disorder(in this case, TS)but you are not willing to give tolerance
when a mistake is made.REMEMBER-- you asked Dr. Laura for her advice, and most of
you people know what kinda doctor she is.everyone makes mistakes, even her. and
you.Now you wanna play Gestapo and ruin her career because
she did not say what you wanted to hear. Give me a break.
do you think that writing her sponsors and getting her show cancelled is going to
vinidcate everyone in the world who has TS? Since WHEN did you start thinking for others who can
obviously think for themselves?ignorance without tolerace is still a world with ignorance, you guys should
really practice what you preach. as for me, i am behind Dr. Laura and i applaud her for admitting she was wrong.
Chapel Hill, NC USA - Wednesday, June 13, 2001 at 09:36:05 (PDT)
I found this site when looking into the whole Dr Laura story. My 10 year old nephew has TS (including the vocal ticks) and as a matter of fact, IN MY WEDDING next year.It would not be the same without my dear nephew and I am appauled that this statement was made by a suppossed educated woman. Thanks for taking action- I'll be writing her sponsors soon.
Rochester, NY USA - Wednesday, June 13, 2001 at 08:06:48 (PDT)
I'm almost 16 years old and I had an assignment to do on a disease to do with the central nervous system. Your site really helped me alot. Thankx heaps and I think the kids with this restricting disease should never give up on their dreams because it's clear from the feedback in your guestbook annd the info on your site they are not alone and all of them are really special. xoxoxox
, NSW Australia - Tuesday, June 12, 2001 at 00:16:09 (PDT)
Thank you for your comforting website - I have just been told that my daughter of 8 has TS - I had never heared about this syndrome before so it came as a big surprice!
After viewing a number of websites trying to find more info on TS I came across your site and what a refreshing change -it was exactly how I felt - what next, where do we go from here? Hopefully the medication that her doctor has put her onto will help with the tic. Many thanks for your support and thank goodness there are people like you who are only too willing to assist other people in their time of need.
DURBAN, SA USA - Monday, June 11, 2001 at 01:43:24 (PDT)
Thanks for all the effort you have put in to writing everything.
**What is the fax # for "Dr." Laura???
firstname.lastname@example.org, FL USA - Sunday, June 10, 2001 at 13:40:41 (PDT)
My son is 9 1/2 years old and was diagnosed with TS about 9 months ago. I knew nothing about TS untill i looked it up on the internet and by reading about it i knew my son had it after his Pediatrion suggested it to me. He is a wonderful smart boy who is very sweet and often gets teased at school. His Nuerologist put him on Clonidine (low dose) but now wants to move him to Level 2 which is a patch called Catapres tts-2. He says his goal is to have my son stop his ticcing by Sept. when he will start the 5th grade. I havent read much about Meds. If you have any info. on either of these meds please let me know. I want whats best for my son, but he just wants to stop ticcing so he could make some friends and be happy at school. I'm desperate to help him but i want to play it safe as well. We are so new to this thing, any help or info. would be greatly appreciated. Thanks for the Wedsite. debbie
Thousand Oaks, CA USA - Saturday, June 09, 2001 at 12:31:25 (PDT)
I am affiliated with the Connecticut TSA chapter and came across your site. At the moment I am redesigning our own Web, and I'd like to add a link to your site on our Resources page. You have some really good information here. Thanks for all of the effort that you have put into it.
Greenwich, CT USA - Sunday, June 03, 2001 at 09:23:24 (PDT)
I have been reading your website for the past few days. Beginning Sat. my 5 year old son woke up from his evening nap and we noticed an abnormal facial movement-mouth and eyes opening wide and then closing-we also noticed a soft sound when he was eating and sometimes he would make a sound with his lips. We immediately thought TS. We have an appointment with a neurologist in August. The first two days the tics were very obvious because of the quantity. The next three days it was very mild, then went back to a "bad" day. Our pediatrician said it could be just a childhood tic because 10% of five year olds develop a tic and then it will fade away. Does this sound "right" to you? Have you ever heard of this happening. Today is Friday and I think just not knowing is hard.
florence, AL USA - Friday, June 01, 2001 at 14:33:06 (PDT)
I have a 7 year old son who I am sure has TS, he has had
symptoms for about a year now, I had no idea what TS was
until his 1st grade teacher mentioned it to me. We took him
to a neurologist and talked to him about his tics. He did
not do any testing on him but said that it was probaly tics.
He is treating him for tourette now. I keep reading how these symptoms are the same as other conditions to and I wonder if that Dr. should have done some kind of testing on
him besides a 15 min. office visit. What do you think?
Decatur, Al USA - Thursday, May 31, 2001 at 22:46:47 (PDT)
I saw a link to this site on the Lyme disease ng. Does one of your kids also have lyme? I have been dealing with Lyme for many years. Also wanted to say that I have an Uncle with TS who is a terrific guy and has had a very long, very full, and very normal life. At the time we didn't know it was TS that caused our Uncle to have these odd little movements and noises....we just thought it was part of who he was . He was diagnosed late in life and then we all said " Of course!!" It was , in his life, no big deal.
That Dr. Laura character sure is a piece of work, eh? Yuggh!!
Rufie710@rcn.com, NJ USA - Thursday, May 31, 2001 at 15:40:01 (PDT)
your sight has been a real big help for my project at school but what you could use is some pictures of kids and or adults diagnossed with the tourett syndrome
cheney, wa USA - Wednesday, May 30, 2001 at 21:53:00 (PDT)
My son was diagnosed yesterday for his tics. His neurologist prescribed Celexa and I am having a hard time finding information on the side effects and how well it works. I would really appreciate any information you could e-mail me.
email@example.com USA - Wednesday, May 30, 2001 at 08:53:22 (PDT)
Hi. My husband ws diagnosed with TS about 6 months ago, he is 41. I am glad to read so much good info on TS. I have yet to meet someone with so severe a case, but it is still comforting to hear what others ahve to say. Thanks
richmond, in USA - Tuesday, May 29, 2001 at 23:02:12 (PDT)
The website keeps getting better and better!
Great job (you and everybody else!) with the message boards!
USA - Tuesday, May 29, 2001 at 21:30:19 (PDT)
It seems like every other day I find a new TS site and am just amazed at the support "out there." I stumbled on the TSNW web board from a reference at another TS web board over the recent Dr. S (as in Strangelove) issue.
I and my two children, son 9 and daughter 7, have TS. My kids also have ADHD and it's quite possible (my wife swears it's true : ) that I also have ADD.
Keep up the good work!
Beale AFB, CA USA - Monday, May 28, 2001 at 00:26:26 (PDT)
I WOULD LIKE TO SAY THANKYOU FOR YOUR INFO
I THINK ANYONE WHO HAS ANY ILLNESS AND TRIES TO OVERCOME ITS TERRIBLE ASSAULT IS TRULY A HERO .THE BATTLE HAS JUST BEGUN FOR MY 9YR SON WHO TRULY IS A GIFT FROM GOD AS A MOTHER STRUGGLES TO KEEP HER CHILD SAFE&PROTECTED FROM ALL
EXTERNAL ASSAULTS HE WILL HAVE TO BATTLE THE INTERNAL ONES
WITH A STRONG MIND. THE INFO YOU GAVE ME LETS ME KNOW THAT
THERE IS A FUTURE FOR HIM ALTHOUGH I AM SCEPTICAL I KNOW LOVE IS THE 1ST STEP IN HEALING THANKYOU TO ALL THE KIND CARING PEOPLE WHO ENDEAVOUR TO FIND AN ANSWER
USA - Sunday, May 27, 2001 at 19:55:54 (PDT)
I'm 23, and I'm studying psycology in an University called I.S.P.A., in Portugal. I've never known anyone with the Tourette's Syndrome.
The first contact I had with the T.S. wsa when I was reading a book called "An antropologist in Mars" (I don't know if this is the correct translation!), written by Oliver Sacks.
I hope that all turns well to you and your kids! Give them my love and lots of portuguese kisses to you!
Ana D. F.
Lisbon Portugal - Sunday, May 27, 2001 at 17:33:23 (PDT)
Thank you for your web site!
I am a Mom with 3 children we have just adopted, and have suspected some thing was wrong, all along. the adoption was finalized almost a year ago, and we started susupecting Tourette's just after finalization. Actually that's when I started noticing the ticking in one of the children.I am almost over the shock of it all, and now trying to get all the info I can, and yes just trying to chill on the whole issue until I get more info.
Elkhart, In USA - Sunday, May 27, 2001 at 10:22:26 (PDT)
THANK YOU FOR THIS WEBSITE! IT HAS HELPED ME UNDERSTAND MY
SON'S CONDITION BETTER AND REALIZE THAT ALOT OF PEOPLE HAVE
MONROE,NC, US USA - Saturday, May 26, 2001 at 15:28:57 (PDT)
My son was diagnosed with TS 3 days ago and his grandmother found this webside for me. I have found it very helpful and it has answered a lot of my questions but still have lots more to learn about this. Thank you for taking time to help and support people with TS.
Spotsylvania, VA USA - Saturday, May 26, 2001 at 10:23:23 (PDT)
Thank you for your wonderful website. I am a 53 year old female recently diagnosed with TS. Had it since I was nine and did not know what was wrong. I am so glad to see that today there is so much info out there and we are not in the dark anymore.
Have you read "Icy Spark" - an Oprah book club selection. It is a novel about a girl with TS. A serious novel about how she embraces it.
Edison, NJ USA - Friday, May 25, 2001 at 16:11:59 (PDT)
My son was recently diagnosed w/ TS. I'm just trying to find all the info & support i can.
sandusky, oh USA - Thursday, May 24, 2001 at 19:03:07 (PDT)
Thank you so very much for your information. It is very helpful and I think it is the answer to my daughters condition, which the doctors hve failed to pickup. Don.
firstname.lastname@example.org Australia - Thursday, May 24, 2001 at 15:29:20 (PDT)
My 71-year-old spouse has just developed symptoms of TS. Is this possible? He is to make an appointment with a neurologist.
Rochester, NY USA - Tuesday, May 22, 2001 at 20:45:21 (PDT)
Thanks for the peace pf mind you've helped me gain!
Spokane, WA USA - Tuesday, May 22, 2001 at 12:59:27 (PDT)
Your page on Tourette Syndrome is soooo refreshing keep it up!!!
USA - Tuesday, May 22, 2001 at 09:06:57 (PDT)
My 8 year old granddaughter was diagnosed today with TS. We think she may have had it for a couple of years. While waiting for the appointment to arrive I went searching for information about TS. I was very lucky to find your site among the first few. I immediately bookmarked it and printed out your information pages. I know my family will still need time to deal with the diagnosis, it does help to have been informed by your site. All we ever want for our
family members is for them to have the best chance at a happy, normal life. Of course, now I wonder if her identical twin sister will have TS, also. Do you know of any information on the probability of twins both having TS?
I was happy to read that most children with TS are having normal lives. My granddaughter is very smart, plays the piano, loves sports, especially swimming, and is in the special gifted and talented class in our area. She is an avid reader and very consciencious about her schoolwork. She has a big heart and cares deeply about other people and animals. Again, thank you for being!
Irma J. Roberts
Modesto, CA USA - Monday, May 21, 2001 at 15:26:01 (PDT)
I contacted you before to say what a big help your site has been to me. My 12 year old son was diagnosed last year as having TS (although his tics have been present since age 5).
I just want to let you know that the diagnosis has not prevented him from making a great success of his first year at grammar school. During this year he has played a clarinet solo at a parents evening, he has represented the school playing rugby, tennis and cricket, he has achieved his gold merit award for excellent work and behaviour and he has a huge cicle of new friends- most of whom know he has TS as he is very open about it. He was happy to have a diagnosis as he was worried about what might be wrong with him. For most people he has told, he is the first person they have met with TS and I feel he is a good ambassador for the condition. He does not want to take drugs and although some times are more difficult than others we know things will settle down again soon. I am very proud of my son and , although I would prefer him not to have TS I think that he has done a lot to show people that it need not be such a dreadful thing.
email@example.com N.Ireland - Monday, May 21, 2001 at 13:13:08 (PDT)
Glad to see some positive info on TS on the internet. I am a 21 year old male with TS. I came from a small town and was not diagnosed bc no one knew what it was. I was accused of having habits to "get attention". The best tip I can give a parent of a child with TS is to be understanding. Our tics get on our nerves sometimes too! I personally haven't lost any of my tics, but I am alot better at covering them up.
Greenville, NC USA - Monday, May 21, 2001 at 11:47:16 (PDT)
Thanks for taking the time and making the effort to share your information on TS. I found your presentation of the material well organized, level-headed, and focused! Well done!
Elmira, ON Canada - Monday, May 21, 2001 at 03:20:01 (PDT)
Thank you for e-mailing me today regarding my comments I made on the Oprah messageboard. Your letter has been life changing for my husband and me. I appreciate your kindness. It relieved me to see this diagnosis was devestating to others. I thought something was wrong with me. It was so encouraging to hear that the devastation goes away and that I will stop looking at my son's tics and start looking at him, my same beautiful child. In fact after reading your letter I went in the family room where he was playing and "practiced". And it felt good. Thank you for your words of encouragement.
Devon, Pa USA - Saturday, May 19, 2001 at 13:21:25 (PDT)
Thanks for the infor. My almost 4 year old son is waiting to be seen by a nuerologist for tics disorder referred by his pediatrian. Your sight helped me understand his condition even though he won't be officially be dignosed with TS untill one year. My son Pat started twitching about three months ago although my part-time day care sitter said she has noticed it longer. My 49 year old brother has had TS but never diagnosed. He has the outbursts of bad language and will not go to a doctor.
I do have a question. Will playing CD games on the computer aggrevate the condition or is there not enough research to determine that yet. My son loves to play on the computer but my husband and I are afraid it may have a negative effect. If you have any feedback on that I would appreciate it.
Thanks again for the infor. I'll be turning to your website for more infor.
God Bless you and your family. We are ultimately in His hands.
firstname.lastname@example.org USA - Friday, May 18, 2001 at 13:50:18 (PDT)
I would like to say this was a great site. I have never got an official diagnoses, But I am sure a have TS. Almost got diagnoses as a child (I am 19 now) but mom was afraid of it or something and punished me for ticking. I thank you for your site. It showed me I am ?OK?.
Rebekah_joyce@hotmail.com USA - Friday, May 18, 2001 at 01:54:08 (PDT)
I am pretty sure I have tourettes...and I'm perfectly okay with it. Sure it's embarasing when I can't stop jerking and shouting in the middle of a sentance in public, but there is another thing that's good. I was watching a program on Oprah and it was on ticks and stuff...everyone who had tourettes seemed to be talented in one way or another. So if anyone with tourettes out there is reading this...dont be humiliated, be proud and say, "I have tourettes, and I am talented."
USA - Thursday, May 17, 2001 at 17:15:37 (PDT)
A pretty impressive and informative site for 'just a mom' Congratulations! I will pass the site on to the children and parents I see, they are always asking for internet sites.
A Clinical Psychologist
Manchester UK - Monday, May 14, 2001 at 11:16:01 (PDT)
My ten year old son was just diagnosed today with TS. Needless to say, I am in shock. I turned to my computer to find some answers and was very glad to find your site. I am still reeling but just reading the stories of other parents who have gone through what I am going through now helps somewhat. I am now thinking back on a lot of my son's past behaviours that have to be related to the TS. Like coughing for no reason, uncontrollably, kind of walking on his toes instead of a heel and toe motion, and other repetitive things. I thought he was just nervous. He is in the gifted program at school with test scores in all areas well above the 99% percentile. He reads voraciously anything to do with science, particularly astronomy and physics. Quantum mechanics is a favorite.He also reads Stephen Hawkings books on quantum physics and wants to be a scientist when he grows up. I have never had any big health issues to deal with in my own family, ever, so I am quite at a loss. Thank you for your site.
Olathe, KS USA - Friday, May 11, 2001 at 11:28:30 (PDT)
Dear Just a Mom (somehow I missed your name on the site),
I just wanted to thank you for all the research and work you've done to put together this remarkable site. My son was just diagnosed with TS this week and although his TS is relatively mild at this point it's been a bit scary and confusing trying to find the proper course of action. Your site has helped clarify misunderstandings and shed light on the thousands of questions we have. But mainly, your nonreactionary (is that a word?)matter of fact attitude has truly helped to calmly lead us calmly to learning how to deal with these new life circumstances. Your diligence and generosity are appreciated a thousand times over.
Louisville, KY USA - Wednesday, May 09, 2001 at 17:00:35 (PDT)
I love Ally McBeal and I think the TS portrayed on it was funny! It is a comedy show and even though I have TS and have since I was a kid I could laugh and laugh because it was meant to be funny. I think we all need to lighten up and understand that in that case it was meant to be funny yet it also held respect for TS too. It was a delicate balance and I think they did their best and I would have liked the TS character to stay on the show as a regular so I hope they bring her back!
JAX, FL USA - Wednesday, May 09, 2001 at 01:41:27 (PDT)
I realize this is a site for children but it took me 20 years to get my husband to see someone for his tics and vocal noises that he deinied vehemently to even having done. I am wondering where I can get information on adults w/ TS as he is on haloperodol and I don't think it really calms the tics( so why take it?). I am a very high strung person who can get very agitated by the noises and such and this has created quite a few problems between us throughout our 24 yrs together. I would appreciate guidance to some other links for adults . If he even knew I was asking for advice he would be furious. Which brings me to a final question. As parents of children w/ TS have you seen extreme anger or meanness from them? My husband is, and I don't know if it is related. Thanks BEE
B11560@aol.com, NY USA - Tuesday, May 08, 2001 at 12:03:54 (PDT)
Thank you. My son is 15 and has an appointment next week with a neurologist. I had someone stop us today and ask my son if he had Tourettes...he himself has it. He was so calm and reassuring, I had to learn more!
After my discussion with him and reading the information located in your website, I feel better and more optimistic about my son's tics. It all fits him exactly. And to think that our pediatrician said it was only nervous tics (for over 7 years!). I am fully armed with everything I want to ask and know that I am armed with the beginning of many questions.
Thank you for the calming information at a particularly scary time for me.
Portage, IN USA - Monday, May 07, 2001 at 16:58:15 (PDT)
I beleived that all people that suffered from tourette syndrome were people that yelled out obsenities without realising it. Now that I have read the information in your website I have a clearer understanding of what it is really about. I have a relative that suffers from it and he is one the rarer ones that talks unwillingly and I can now see that he really isn't alone. Thankyou very much for helping me become a more informed and supportive person.
WOLLONGONG, NSW AUSTRALIA - Sunday, May 06, 2001 at 19:31:01 (PDT)
My 9 yo son may or may not have TS. We will see a neurologist in June. Where do you start? What questions do you ask? The medications
scare me. Can you provide me a list of medications and what they are used for?
Grants Pass, OR USA - Thursday, May 03, 2001 at 10:42:08 (PDT)
Greetings Fellow Tickers! I am a Physician with TS, in my first year of a Neurology Residency. I very much enjoyed the link to "Tourette Barbie" (http://www.http://vorel.com/T-Barbie.htm) and can only encourage others to find humor in our shared situation. Remember that "tourette syndrome is a diagnosis, not an excuse" (thank you Icy Sparks)and can DEFINITELY be a good addition to your life! TS has made my life much more interesting, much more colorful, and much more fun!
Sure, my teenage years were a bit rough, but whose aren't?
Just dont give up, and parents, dont let those kids misbehave just because they have TS. Be strong, make them strong, and they will rewared you a million times more than a mere "normal" kid! Having TS is like driving a car with no brakes, scary at first, but once you get the hang of it, a whole lot of fun.
Jackson, MS USA - Tuesday, May 01, 2001 at 13:56:43 (PDT)
This website is not affiliated with the Barbie website !!
Well! nice to find the light side of a bad thing!
I showed my little brother who is a sufferer, it's the first time i have seen him laugh about it!
He Hates Barbi!
We hate Barbi Fan Club!
Darwin, NT Australia - Sunday, April 29, 2001 at 22:20:29 (PDT)
We just received word yesterday from our pediatrician that our 13 year old daughter possibly has ts. She has been
recently unable to control a twitch in her shoulder that causes her arm to fly into the air. After meeting with the
doctor yesterday, we went searching for a better understanding. Reading alot of literature, it has become very
apparent to us that this may have been going on for about 10 years. There are several other areas that have been
so obvious but treated as learning disablilities (dylexia, reading problems) and allergies (constantly clearing her
throat, sometime for hours, lasting a couple of weeks to a month). Thank you so much for your time and energy to
pull together this information and to come forward to help others through what seems to be the unknown.
Greensboro, MD USA - Friday, April 27, 2001 at 07:24:06 (PDT)
What a beautiful person you are and what a great website. My 4 year old daughter started coughing non-stop after
a strep infection. Two months later she had a lot of symptoms of OCD and became lost in her own little world. She
improved and within 6 weeks was back to normal. Then in another two weeks, all of her symptoms returned. This
time, we knew to get a strep test and found she had an infection. This type of tic with OCD is called PANDAS. It's
frightening because it comes from out of the blue and becomes severe overnight. Thanks to your website, I feel
that I will be able to handle the tics that still happen daily with her. In the last 5 months, I have come to accept her
tics and see the beauty in the generally happy and creative child I have and in the health we enjoy. Thank you for
your compassionate and scholarly website. You will continue to help so many!!!
il USA - Thursday, April 26, 2001 at 02:40:27 (PDT)
Thank you for this site. Today is my first day with the diagnosis of my oldest son (age 7). I'm glad I read this first
before starting my research.
Tomball, TX USA - Wednesday, April 25, 2001 at 14:14:43 (PDT)
How I wish I would have found you three years ago...that's when our now 11 yo son was diagonosed with Tourettes and
OCD. He's been taking Risperidal (at rather high dosages) and I'm so worried we've made a horrible mistake by
doing so. Will you please e-mail me so I can discuss this further.
I'm so confused...email@example.com or firstname.lastname@example.org. Thank you.
Jefferson City, MO USA - Tuesday, April 24, 2001 at 06:59:43 (PDT)
I have 3 boys w/ TS/OCD. My oldest,12, is almost clear of tics w/ no meds. My twins, 10, are on meds and do well, but reading your web page helped me feel SO much better. Thanks!
primm springs, tn USA - Monday, April 16, 2001 at 11:24:21 (PDT)
This website is not affiliated with the Barbie website !!
I found out a lot of things i did not know about ts. My main point of interest was the BArbie animation on the first page. Can u please let me know how you did that?
ga USA - Saturday, April 14, 2001 at 06:00:26 (PDT)
My son has TS and it has been very hard to find out what has been wrong
for over 9 years! I have gotten alot out of the web sites and yours is very
Fl USA - Tuesday, April 10, 2001 at 21:09:14 (PDT)
One of my very close friends has TS, so i wanted to know what her weird
behavior was all about. Shrugging, twitching, it all kind of scared me at
first, but now i know why she does that. Thanks!!
Jessica Leigh A.
Douglas, MA USA - Sunday, April 08, 2001 at 15:02:11 (PDT)
I found your web site very informative. I came upon it while trying to find information to pass along to a summer camp nurse for my bright and energenic 13 year old son with Tourettes. It is so nice to find out we are not alone. The words of encouragement to carry on as if normal were very much appreciated.
Cambridge, ON Canada - Thursday, April 05, 2001 at 06:46:08 (PDT)
My10yr old son was just diagnosed w/ TS last week. He is showing signs of mild ticcing. Are we wrong to put him on Orap. He is just taking 1mg a day. The effects were immediate. The next day he stopped blinking & twitching his eyes. Should we take him off of the med? Please let me know what to do? Susan Chapman
Dighton, Ks USA - Tuesday, April 03, 2001 at 09:42:22 (PDT)
Last week, we learned that my 10 year old nephew was diagnosed with TS. When I first hear this, I was sitting in my office at work,and nearly broke into tears as I thought of the terribly difficult life that I thought this syndrome would bring to his life. But, after studying the syndrome, on pages such as yours, I have learned that TS is something that can be handled and that my nephew very likely will lead as normal life as he would have without TS. I'm very glad that there is information out there that can educate people so quickly, and stop the initial feelings of pain so fast. So, thanks.
USA - Monday, April 02, 2001 at 08:27:41 (PDT)
Testing again. I am SO sorry for the ongoing difficulties with this Guestbook. Most entries for Jan - Mar 2001 were lost. Older Guestbook Entries are in the Guestbook1 and Guestbook2 files.
USA - Monday, April 02, 2001 at 06:53:44 (PDT)
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