Tourette Syndrome - Now What? Guestbook 4
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Cheryl W   19/Aug/2002:12:08:07
To Kim Lane...

Hi my daughter is 7 and has motor tics and does not have Tourettes.
Over a year a half ago we went to a few nero. dr.s and one said she had
tourette's ater examining her for 15 min. She has no other signs of
Tourette (motor tics with verbal tics or ADHD or OCD). We then took
her to a nero. dr. at a children's hosp. who examined her for about one
hour plus talked to me and my husband (and reviewed our familiy's
health) and we were told that she does not have tourette's but a form
of which is just Motor Tics. We have tried several different
medications (only because these tics have bothered her and has come to
be a problem in school with writing and other kids picking on her) we
found meds that finally work and do not make her tired or slow her down
at all. It has made the tics practicaly diminish.

I found this site to be one of the best and informative sites there are
out there especially for kids who have tourettes or just tics.

For a long while I felt as
 
Sara Huffman   16/Aug/2002:12:25:24
My 11 year old beautiful grandaughter was just diagnosed with TS. I
have realized since she was a very young child that this was what she
had, but the tics have recently progressed a great deal. I am very
skeptical about using medication as long as she is able to learn to
deal with it herself. She is a very active, outgoing child. She has
shown signs of OCD for quite awhile also. She is entering middle school
this year. What now, besides letting her teacher's know not to be
critical of any of the tics she displays? Also, are there any support
groups in their area. They live in Morgantown, West Virginia. Thank you
so much for this helpful site.
Sara Huffman
8/16/2002
 
Nicole C   13/Aug/2002:13:24:58
I am a 29 year old mom with a 5 year old son just getting ready for
school. My husband and I have been questioning our son's noises and
arm jerking actions. The doctor says that it was just a "FAZE" or blam
allergies. We have just had are first teacher interview. I know that
my son was nervous but he was jerking and moving his head so much that
I just was not setteled with the Doctors reasoning. I was telling him
to stop or just draw his attention to what he was doing. The teacher
said it could be Tourette Syndrome. Now that I have found your sight,
Thank you. You have spelled out my son to the "T". That reading
everything exactly down the line of what my son does and acts like.
Thank you. Now it is time to call the Doctor again.
 
Roger Kassabian   06/Aug/2002:14:55:51
I am 29 years old from Beirut, Lebanon. I was diagnosed with Tourette
until I was 20 years old, and I am on medication since then. Here in
Lebanon, no body knows about this terrible disease. I saw a lot of
physicians and no body knew what I have been through except one doctor.
Your website helped me a lot to understand the nature of this disease
beause I knew nothing about it until this year. I taught I was unique!!!
I graduated from college with a B.Sc in Food Technology and I have a
very important job. Your website helped me to restore my self
confidence, to be self dependant, to take important decisions. I am
doing my own therapy because my physician is not giving lots of credit
to my illness!! I only want to thank you and to congatulate you for a
wanderfull website.
I wish you can publish this few words.
Finally i want to say that no one in my family have or had Tourette
syndrome, so I beleive that this disease is not always genetic.

Tha
 
Lynda Riddell   04/Aug/2002:13:54:49
Hi,

My son was finally diagnosed as having ADHD about 4 years ago when he
was 8. This was after years of going back -&- forth to hospitals. We
mentioned at the time about his involuntary movements and the drs said
that they would only deal with one thing at a time. Well the
involuntary movements are getting worse. We have an appointment on 14th
August and would like some help on how to get the doctors to listen to
us.

I have printed your website and am going through it tonight.

Thankyou

Lynda
 
Kim Lane   02/Aug/2002:18:06:15
My five year old son was diagnosed with motor tics yesterday. I'm trying to
get a clear difference of what the difference is between that and tourettes
syndrome or is there a difference.
 
Norm Hickel   02/Aug/2002:01:23:50
My son has TS and a host of other issues... he's 12 and has finally
gotten past the denile stage. He attended his first TS camp a few weeks
ago and has decided never to miss another... its important for kids
with TS to be around others with TS just so they can learn that their
not alone... and the same is true for their parents...
 
Barb Merica   31/Jul/2002:21:59:44
Our son Jordan was diagnosed with ADHD when he was 3 1/2 years old and
now at age 10 he has been diagnosed with mild Tourette Syndrome also.
Jordan has been experiencing the facial tics and body jerking movements
for about three years now. Every week a new tic will arise and I just
wish there was something we could do to make them stop. Jordan takes
clonodine 3 times a day along with adderall. It is very difficult to
watch your child suffer like this, but we're doing our best to make
everyone aware of his condition.
 
MrsMom An Educational Emporium 27/Jul/2002:12:14:54
Hello! We were directed to your site by Kathryn Taubert who seems to
be one of the sweetest person I have met as she has been most
encouraging to us. Our son has recently been diagnosed with TS. He is
fifteen and a treasure beyond price to us. So many changes have taken
place lately and we are over-whelmed by some of them.

I am still trying to digest all the online info about TS and am trying
to find a bulletin board/chat room that my son can visit and
speak/communicate with other children who have TS.

Sp far from what I read, your website seems to be a God-send as it is
given in a perspective of the child/person does not have a disease nor
different. So, here I go back to read more...*smile*

Thank you and God Bless you.

The Taylors
 
Jennifer Scola   24/Jul/2002:15:09:39
My son was diagnosed with ADHD when he was 7. He is turning 9 this
summer and has developed tics. We took him off of Adderall because we
were sure that they were causing the tics. He has been off since May
and his tics are much worse. They have gone from throat clearing to
body jerking and teeth clashing. We saw a neurologist this morning who
has diagnosed him with Tourretts. I am very worried, sick,
distressed... I am also confused about wether or not to put him back on
meds for his ADD. His self esteem has been so unbelievable this past
year because he has done so well in school. Now, for these tics to be
so noticable, I am afraid to cause any more "damage" with medication.
I feel very guilty. Thank you for your web site that has calmed my
nerves (a little)
 
beth   23/Jul/2002:23:07:35
WOW! Finally a web-page with a positive attitude about a long-suffering
*(although needlessly) problem. Thank you, thank you, thank you for
your knowledge and honesty! From one Mom to another, THANK YOU!
 
Kirk Lowell   13/Jul/2002:21:43:55
EXCELLENT TS information site!!!
 
Kathy E   10/Jul/2002:20:56:17
Wow, thanks for a great web site. The letter to parents was written to
me. I am looking forward to meeting other parents with similar
concers. My son has been dx with ts and so far I am having a more
difficult time than he is. I am posting to the msg board in hopes of
gainging some support. We are far and removed from the rest of the
world here in Japan so I am looking forward to sharing with you and
others at your site. Thanks again for a great site.
 
Cheryl W   08/Jul/2002:23:06:01
What a wonderful site, I am back again with some questions. My 7 year
old daughter has tics. She was on clonidine patch which worked
wonderful (the tics somewhat faded away) she became more confident in
herself then. Kids weren't bothering her is school about why she jumps
and rolls her eyes. Because she had an reaction to the adhesive from
the patch we had to discontinue clonidine patch. The Dr. said
clonidine pill's side effects were extremely tiredness so we are trying
tenex which is not helping at all. What is next? I do not want to
sedate my child. And the tics are comming back. I don't know what to
do and I don't want my child to be some sort of experment. There has
to be some medicine out there that can help with tics. This is so
frustrating. I wish so bad that I can help her. When you are a parent
you are supposed to help them and now I feel like I am letting her down
by not helping her. She understands this but I don't. With modern
meds like there is today yo
 
sara   06/Jul/2002:08:36:55
i HAVE AN 8 YR OLD SON WITH ADHD/TOURRETTES. IT HAS BEEN VERY
FRUSTRATING TO FIND HELP FOR HIM. HE WAS DIAGNOSED AT 6. HE WAS ON
ADDERALL -&- TENEX FOR THE ADHD/TICS. IT WORKED FOR 10 MONTHS AND HAS
BEEN NOT WORKING FOR THE TICS SO WE TOOK HIM OFF ALL MEDICATION.
ALTHOUGH THE TICS WERE SOMEWHAT BETTER, BUT NOT GONE, HIS BEHAVIOR WAS
VERY HYPER. WE PUT HIM BACK ON THE MEDICATION, AND WHILE THE
HYPERACTIVITY HAS DECREASED THE TICS, FLAILING ARMS AND LEG AND HEAD
JERKS IS SEVERE.
DOES ANYONE HAVE ANY SUGGESTIONS ON MEDICATION THAT HELPS THE TICS
BETTER? HE TRIED RESPIRDOL, WHICH WORKED FOR ONE AND A HALF WEEKS AND
THEY WERE ALSO SEVERE. THANKS.
 
carolyn quillen   04/Jul/2002:18:15:00
I have a grown son with TS. Have not been involved in treatments, info
or anythng ina long time.Have a 3 yr old gson. Just wanted to see what
is new.Thanks
 
Tina M   27/Jun/2002:20:32:25
I have a 7 yr. old son who was diagnosed at 5 1/2 yrs. He started out
with the sniffing, nose rubbing and eye blinking. Once the facial
grimacing and throat clearing started I knew that it had to be more
than just allergies. After searching the internet, I figured out that
it had to be TS. A pediatric neuro. at Johns Hopkins Hospital confirmed
it.In the past year and 1/2 we have dealt with the original tics along
with some new ones: hair twirling, nose picking, stepping backwards,
spinning, mouth opening, eye rolling, smelling his arm and eye rubbing.
So far his motor/vocal tics have not been the big problems. He is
extremely emotional,tactile senst.is a big prob. He is currently seeing
a therapist for his anxiety and lack of self esteem. We have tried
everything and figured that it wouldn't hurt to try one.
We really don't want to go the med. route until we have to. It's
really heart breaking every time a new tic starts. I can't help but
worry, what tic is next and will it be w
 
ema   20/Jun/2002:12:31:48
thanks for the useful info.
 
Hope Roohr   17/Jun/2002:11:26:23
Our 8 year old daughter has been diagnosed with a tic disorder-
possibly transient, possibly chronic (who knows)- could even be
Tourettes but so far we have seen nothing but neck -&- head tensing- this
website has been very!! helpful as we panic along.
 
bunnie   15/Jun/2002:22:36:51
My sister just found out that my 8 yr old nephew has turets.We dont
know much about it but I am devestated.He has been thru enough
already.The diagnosed him with ADHD when he was four and I dont
understand why they didnt see this then.Is it possible they could be
wrong?
 
Margaret (vic aust)   15/Jun/2002:22:02:53
My 37 year old son was diagnosed when he was 11 years old after 4 years
of one doctor after another. After reading some of the letters other
parents have written I realize my son was not as bad as he could have
been. He had quite a number of the motor tics ( some of which still
remain) but not as bad as they were all those years ago. He had a very
unhappy period in teenage years being called names etc did not mix
well . He was treated with Haloperidol(serenace) only has medication
occasionally now. If I look back to what I thought his life would be
like with Tourette Syndrome I couldn't have been more wrong. He is a
thoughtful considerate loving son who throws himself into everything
he does. His working life has him dealing with the public everyday, no
stuttering as he used to do, his confidence has soared. I wish I had
been able to read other parents stories all those years ago, they
certainly would have helped. Thank you.Marg.
 
Cheryl W   14/Jun/2002:20:53:41
to tina:

Tina in ref. to you note, my daughter is 7 an has motor tics (she does
not have tourettes) but because of her tics have increased she is now
on medication (is has bothered her social life and school work) since
her nero. doc. put her on medication these symptoms are now something
she can live with. Her tics seem to have slightly diminished. I am
not a believer in giving children meds but this seem to work for my
daughter The medication we have tried is clonidine (patch) or tenex.
Neither made her tired nor side effects, I realize no children are
alike and some have diff. reactions but you should ask you doctor about
those medications.

This really is a wonderful site, I have learned a lot from this, thanks
everyone.
 
Tina   13/Jun/2002:23:22:49
I have a 14 year old son with TS. He was diagnosed at the age of 7.
His doctor put him on medication, the medicine caused him to
hallucinate. We took him off the medication immediately. The past 7
years he has bravely dealt with chronic pain in the neck area, his
motor tics vary. His tics come and go and worsen when he gets
extremely tired. My son will begin highschool this year. We would like
to know if there are any new medications for tics with minimal side
effects and will not make him sleepy. I will be watching and waiting
for an answer from someone. Thanks!!!!
 
Nicole Ducille   12/Jun/2002:13:07:20
My 10 year old daughter was diagnoses with tourettes syndrome when she
was 8 1/2. Yesterday, one of the tics I'd hoped would not come back -
did. Her head jerking gives her a headache and it breaks my heart to
see her do it. I was feeling down and scared today so I decided to
check the internet - I'm glad I did. This is the first time I've been
on this sight - after only a few minutes of scanning I'm feeling more
at ease and less fearful of the future. I'm at work so I can't spend
too much time with you - I'll be back on when I go home.

Thanks!!!!
 
chris kennett   11/Jun/2002:23:17:29
i hope i filled this ouy right.i am new with this computer but i need
some advise to try and help someone who is very special to me who has a
17 year old boy who has tourette.please try to reply thank you.
 
jeff   10/Jun/2002:02:49:49
My son was recently diagnosed with TS. The neurologist was not too
concerned. He has not displayed any co-morbid academic problems to
date. I now realise that he has had mild tics since just prior to
his third birthday. He is 5 1/2 now and while arguably still mild, his
tics have increased. He clearly has one or two consistent tics
(sniffling, and face grimacing). I have observed as many as 12
different classic tics from him. Some, I noticed just once. Most are
not done regularly and are resonably rare. No one has ever
noticed ,except his mother and I, that he has a problem. I am trying
to ascertain if anything in the future can be predicted by what I am
seeing at this time. Also, is it possible to train my son to avoid
some tics and replace them with others. For example, can one tell a
child with TS not to touch or kiss someone else, "if you need to tic
just blink or sniffle instead". Any experience? Thanks for any help.

Jeff
 
David W. Morris   08/Jun/2002:22:14:10
I believe my son has had Tourettes symptoms for many years. He is now
15 and the symptoms are less. Has anyone heard of using natural
supplements such as Flax Seed Oil? Because it is mild, I would prefer
non-medication. thanks
 
Kiana www.hummingbirds-hummingbirds.com 06/Jun/2002:20:27:15
Cool site and interesting... nice work!
 
Verniece Johnson   31/May/2002:13:45:24
Thanks for having such a good site. I used this site to give
information about Tourette's Syndrome for a project at school. I think
that this site is very helpful. Thanks again!!
 
Cheryl W   29/May/2002:13:50:25
Thanks to tosy I found this site which is very helpful. My 7 year old
daughter has Motor tics but does not have Tourette's. I have been
trying to locate more info. And am glad to know that I am not alone.

Thank you.
 
Maria   29/May/2002:00:12:30
This is my first time here. I am so new to all of this. My seven year
old daughter is having many many tics and they have just totally
worsened the past few weeks. We finally see a neuroloigist in 2 weeks
and I don't know what to expect. I love her more than anything but it
breaks my heart to see her doing all this. Is this wrong? I wish I
could take it all away.
This site I know will be a tremendous help for me
 
bubba sparx   28/May/2002:13:28:22
 
Milton Murrelson   27/May/2002:16:58:54
Dear Parents:

My son was diagnosed with "Tourette Syndrome" four years ago. His doctor
said it wasnt his fault that he cussed and misbehaved all the time. He
put my son on a bunch of drugs that didnt do nothing. About 3 months
ago I threw all those pills away and gave Billy a good spanking. Every
time he cussed or flipped the bird I whipped him good. Now he is cured
of "tourette syndrome" which isnt even a real disease, just a label
stuck on bad kids. The bible says spare the rod, spoil the child. I
know, I can cure Tourette with a good whipping.
 
Kerry Miller   27/May/2002:03:30:08
My daughter has just been diagnosed.She is 5. She is affected by her
motor skills.(complex).She sticks her legs straight out, spins her
hands around each other,has facial movements,shrugs one shoulder up
and down,this is all at once. I can't even do it if I try.She has
autistic traits also but we haven't got a book big enough to write
them all down.Happy,releived,shocked,all in one emotion.
 
Priscilla Eger   25/May/2002:16:38:51
My husband found out he had Tourette's later in life. Mostly he has
problems sleeping. We have him on medication for sleep. Life goes on. I
am glad I have found this website.
 
Wendy Markey   24/May/2002:11:47:54
Thank you for the info...Our son was diagnosed two years ago,just when
we think we have his condition figured out, it changes.It is a struggle
and a challenge, he also has ADD,OCD with his TS.I am wondering how
other parents cope with the outbursts and awful behavior...I was a great
mom until TS....Now I don't seem to know what the heck I'm doing.I hope
to find some support. Thanks
 
Tammy Meske   23/May/2002:03:08:36
Thanks for posting such helpful info. Our son was just diagnosed and
we weren't sure about where to turn or all the details.
 
Lynne D.   22/May/2002:21:36:12
Does anyone know where I can get a "Boycott Dr. Laura" bumper sticker?
 
Suzanne Dubois-Hill   22/May/2002:14:32:26
I appreciate the insights and humor of these thoughts!!! Iam
conducting a social research project, as an adult student of a nine yr
old boy living with Tourette. This birth order study of TS will
complete my BS. It is a confidential survey, and I would be ever
grateful if you would like to participate in it. Thank you, Sue Hill
 
nancy suelter   15/May/2002:20:40:06
 
Cynthia   13/May/2002:09:06:33
Thank You so much for this site. My son (almost 8) has been
experiencing eye blinking since he was 3 or 4. I did take him to the DR
and he said could be allergies but to ignore it. I really wanted to
believe it was allergies. There were a few other minor tics until about
7 months ago when he went on a camping trip with my DH and his older
cousins. He then started shaking his head/shoulders. Looked like a
spasm and REALLY freaked me out. I thought it was a brain tumor! I ttok
him to DR and he said it was a tic and to completely ignore it (hard to
do) or it would get worse. It lasted a few days and then he returned to
his normal small tics. Last week, he made his Communion and he
started "jumping" in church. I know these tics are
tired/stress/excitement induced but it is still hard to ignore. My DH
is the greatest and I'm trying to be strong but I cry alot now. We are
still waiting for offcial Tourettes diagnosis (b/c I am witing to find
a DR experienced with this--trying to eliminat
 
Garth Shamley   09/May/2002:01:36:24
 
Tina   07/May/2002:21:02:27
My son Sam has been ticcing since about 4yrs.old. First visit to
neurologist when he was 5.We were told he would out grow them. Then in
the middle of first grade they became more verbal. We took him to
another neorologist and were told it was TS.The school has been
great.His classmates are great. Sam is a very well liked boy.He does
well in school although he hates doing homework.We had a staffing at
his school.He will be put on a 504 program,witch is great.All the
teachers will be educated then the teachers will educate the students.
That I feel will help out alot.The swearing has calmed down aloy. I
have been lucky early on the pediatrcian had told us not to discipline
Sam for his so called habits. I try and teach my son about humor, I
tell him its easier to laugh then to cry.I try not to worry about the
future and take one day at a time.God has blessed me with him and I
will help guide him. He has a very loving 18yr old brother and two
parents yhat love him. We have great family
 
nancy m   03/May/2002:15:26:43
Great website.Learned more on TS.Thanks.Dont hesitate to email me any
time for support as my 11 year old son has ocd adhd and ts also.Maybe i
can be of some help to someone.
 
Brenda   03/May/2002:10:15:42
My 7 yr old son just got diagnosed with TS...he has 5 different
tics..the ped.neurologist says to just let it ride...she seems to think
that with that many tics he will eventually have the loud verbal
eppisodes......The ped.neurologist also stated that my 11 yr old
daughter has tics......I dont have anyone in my family with this ...is
it inherited or where does it come from...I am researching all I can on
this disorder.....
 
jennie   02/May/2002:19:33:17
I have a ten year old stepson with what I would classify as severe
Touretettes - constant lound swearing, spitting, headbanging,
compulsive touching of food as well as a whole range of minor tics. He
lives with us for half of every week and I'm finding it extremely hard
to cope with. When I met him 3 years ago he only had eye twitches and
head movements . My husband and I now have a one year old son together
and I'm terrifed he'll have it too, I could handle a mild case but the
thought him being like Emilio is devestating. I'm good friends with his
mmother and she finds coping with him very difficult too. She has an
older son with schizophrenia (previous marriage,not related to my
husband, gee it's complicated). Both my husband and her are a
bit "twitchy", she has facial twitches and sniffs, my husband blinks
and has an arm twitch, but neither have been diagnosed with tourettes.
Help! Emilio takes haliperidol now with little effect, his parents and
I are very unwilling to take this
 
Monica   01/May/2002:22:27:49
Hi:
My name is monica, and I have a 6 year old son who just just recently
diagnosed with TS. I was very floor at the process of the doctors
final diagnoses. I am by no means in "DENILE" but would want a
complete and thro gowning over, like some sort of testing, blood work,
etc.
None of that took place, doctor came in look at my son playing and
writting and coloring etc, asked a few question and handed me a
prescription for clonidine and send me and my son on our merry way.
Is this what takes place??? I want to know!!! My gut tells me to
find a leading specialist in the field of TS in my area for a proper
going over.
But to find one(NOW) that's where I get off track? How do I find one
in my area. I am in central cailf and completely lost on this one.
Could you please advise me as to what I need to do and where I need to
go Please!!!!!! I want to get this child properly diagnosed and
setteled in along with his ADHD. Please help out!!!
Thank You
Monica
 
Brenda   30/Apr/2002:17:05:54
I am a single mother of a 10 year old son with tourettes. He was
diagnosed 3 years ago and every day i see changes, some for the better
some for the worse. He goes to therapy to5 muscle tightness. He also
has several other dissorders. He looks perfectly normal. Beautiful in
my eyes. I need support...I need friends....I need hope....
 
kirsty   29/Apr/2002:18:43:25
this site is great, iam doing a school project on tourettes and this
site ahs been a great help. Maybe in future you could add something
about the possible causes or tourettes, the effects it has, the problems
it causes and the possible ways of alleviating the suffering of, or of
helping the person with this disability.
 
Lesa   26/Apr/2002:15:36:06
My boy friends son, he's like my son too! has just been diagnosed as
haveing touretts syndrom, this sight is such a comfort and help to us .
thanks so much. It is so confusing and a bit scary to us as we knew
nothing about touretts syndrom and we have so many questions and
worries.
 
Lisa Snider   25/Apr/2002:13:43:10
I would like some information regarding this syndrome. I have been
concerned about my son for awhile now. He was partly diagnosed with
ADD.(if that makes any sense!) He was on Adderall for about 8 months.
We took him off in the beginning of the third grade and he has
developed these motor and verbal tics. I have now decided to go to the
pediatrician. Could this be TS? If so, what causes this? I am so
concerned and I want to know all there is to know. Thank you.
Sincerely, Lisa Snider
 
Pam   23/Apr/2002:15:28:35
My daughter was a perfect angel for the first 7 years of her life.
Blinks and twitches then started.. followed by tics, anger, agression
and out of control behaviour. I still see my angel in her and love her
so much. It is such a challenge at times to know how to deal with the
Tourettes while keeping her self-esteem intact.. along with my sanity!!
She is almost 11 now and puberty is kicking in.. what a challenge!! Her
9 year old brother shows no signs yet... cross my fingers. Thanks for
your web-site. It gives all of us great assistance with dealing with
the syndrome without damaging the child. God Bless our Children!!
 
Eleni   22/Apr/2002:13:52:50
Hello,

I have a brother 30 yeras old and is diagnosed for TS for 2 years now.
At the beginning he had some vocal and motor tics but now they have
developed. Now he is in a condition that he cannot work, as he does not
speak (he understands but he does not respont vocaly) and he has
several tics.

He has visited quite a few doctors but here in Greece they do not
really know many things about TS. Can you give me some information of
how you are dealing with it in your son's case? Is there any special
medication in America for people with Tourette?

What kind of symptoms did he have..? Is he 'cured' now?

Sincerely,
Eleni
 
Pamela Powell   20/Apr/2002:16:33:47
Hi, I have read many of the comments and they were very interesting.
One thing I cannot find is how do you deal with the school systems who
refuse to accept Tourette's Syndrome. He is 12 and diagnosed with TS
at age 9. He is told to stop making those noises and quit moving like
that. He say, "I cannot help it." They conider this being a "smart
alec." If anyone has experienced this or has a solution please let me
know. Thanks Pam
 
Garry Earles   13/Apr/2002:14:37:51
This is a new EMAIL address for me. For those I know.. HI!! and for
those I don't, I'm a psych social worker who specializes in the
emotional/psychological/social effects of TS. I have a brochure for
those interested. Thanks, Garry (g.le@verizon.net)

THANKS A HEAP FOR SUCH A GREAT SITE.. A TERIFF SERVICE -&- RESOURCE!!
 
Hopeful   12/Apr/2002:12:53:55
Thank you -&- bless you for this site. My son has been suspected of
having Tourette's for a while; a family member has been told she has
it, so it did not come as the shock it might have, but the neurologist
who gave the "definitive" diagnosis was reluctant to "label" him,
saying it was o.k. to use the term w. the child study team but
otherwise would not commit to calling it what it appears to be, saying
he had "Tourette's-like symptoms". This is very frustrating, as I
cannot educate my family regarding this syndrome when there is a
certain level of denial. In any case, your site is a refreshing -&-
reassuring place to visit.
 
Christal Janis   07/Apr/2002:00:28:42
Thanks for being here to give support and information to people, who
need to be able to understand such a misunderstood illness. Christal
Janis
 
Kathi   06/Apr/2002:17:21:35
I've just stumbled upon your website, and I can't wait to sift though
the whole thing! We, too, are at the TS-So what stage, my son
being "officially" diagnosed about three years ago. My father-in-law,
and my brother-in-law both have Tourettes, so we were looking for it in
both of our children. When my daughter was 3, we noticed some eye and
mouth tics, but they turned out to be typical 3-year-old growth
twitches. Our son, who didn't show any signs of tics until he was
around 4, was the one who "inherited" this wonderful experience. When
we first noticed the tics, we immediately took him to a pediatric
neurologist, who basically allowed us to diagnose the Tourettes
ourselves. At that point, Scottie (our son), was only having high tic
days about once every week or so, and of course the day we visited the
doctor was a low day...isn't that how it always happens? Anyway, the
doctor respected our observations enough to give us the diagnosis,
which allowed us to be able to get res
 
Leanne   06/Apr/2002:02:43:58
Thank you for a change of pace. I am in the process of getting
an "official" diagnosis for my soon to be 8 year old son. It is so
comforting to read your thoughts regarding your children. I've always
known my son was different, but I believed that I was blessed to have
such an original person for a child. The comments and reactions I
would receive from others-usually strangers in stores, restaurants, or
those from brief acquaintences-would only re-inforce how great my son
was.

Then he started kindergarten and I watched this bright, loving,
outgoing child turn into a frustrated, angry and very sad person.
Despite different schools or environments, nothing seemed to fit for
him except to continue staying at home with me. While it would get
trying at times and burnout was something we battled constantly, it
wasn't until I allowed his second grade school to begin the "testing"
that I began to realize it wasn't other peoples inabillity to handle my
son or my son's inabillity
 
Meredith Welch   22/Mar/2002:22:59:52
WE have been with neuro clinics and doctors for our 12yo son for 8
years and today we saw a new doctor, with the same Rehab Clinic, who
listened to our concerns about TS. Our son was been diagnosed with ADHD
and OCD for over 5 years and the dr. seems to think he should be
diagnosed with TS. I am looking for information on how diet
restrictions affect TS.
 
amber blasingame   19/Mar/2002:18:58:45
Hey My boyfriend well ex-boyfriend's brother jsut got diagnosed with
tourette's syndrome and well he killed a cat so I have been reserching
things to help his mom out
 
Ksandra   19/Mar/2002:13:51:22
My 9 year old son was just diagnosed with ADD and a tic disorder. The
scary part for me was that the tic disorder may worsen with ADD
medicine. Now I feel it is not that worrisome, and that it may
possibly be better to stop the ADD medicine than to add a med for the
tic disorder. I am so glad to know that his ticcing is not just bad
habits, thanks for this website!
 
Gary Halton   19/Mar/2002:06:49:07
One of my little girls age 11 has TS. I think it has hit me much harder
so far than her but I have found your site reassuring. Thank you.
 
Robin Rola 14/Mar/2002:11:25:26
This note is for all the parents of a newly diagnosed child. It has
been exactly one year since our son, Christopher (now age 8) has been
diagnosed. NONE of my worst fears came true. Chris's verbal and motor
tics come and go, but his baseline tics are unnoticeable. (I can
recognize them, but no one else can, including his dad.) The school
personnel have been wonderful. Chris has a place where he can go
to "make noises" when he has a flare-up and it's done very subtly so
the other kids don't know. He uses his "noise place" about twice a
month. He takes Ritalin for ADHD and his grades have sky-rocketed. His
tics did NOT increase with the medication. (The latest Yale study
confirms this.) His friends are fine with his occasional flare-ups and
Chris is very comfortable telling people he has TS. (Since I couldn't
even say the word for 6 months, this is pretty amazing.) The
neurologist is confident that Chris will outgrow his symptoms and I
have made it my mission to educate people that
 
kitten   13/Mar/2002:12:04:02
hey, i am both Bipolar and ADHD and ADD but it is cool. As long as I
have Mdication a Do wonderfully. Life is Good.
 
M.J. Moreno   08/Mar/2002:18:54:35
I am a 7 year old boy who was just diagnosed with TS. My parents need
to know how to help me. We are reading your website to find help.
Thank you for being here. M.J.
 
Deb   04/Mar/2002:12:52:16
I just finished reading your website and I want to say Thank-You. My
son who is 8 has just been "diagnosed" with TS. Now that I have
familiarized myself with symptoms I'm convinced he's had it longer than
I thought. When the doctor verbalized what I've been thinking, it was
awful. My husband and I were so upset. Why, what, how??? We've been
reading alot and it is very scary. It seems to focus on worst case
scenarios. Your website showed me this is not true. We have been
trying to concentrate on the positives and not focus on the "what
if's". It is so refreshing to read others stories and know that we are
not alone.
Thank you again and I'm definitely bookmarking your site.
 
Darlene   24/Feb/2002:22:39:33
My 9 y/o son has yet to be diagnosed but the Neurolgist is treating him
as if he has TS. He has prescribed for him 0.5mg of Haloperidol. My
sister is a nurse in a local Hospital and everyone there that she has
contacted about this drug has agreed that he does not need to be on it.
I need some help and some greatly appreciated input. What do I do.
Please send me some information about the best medication for TS.
 
James Graham   23/Feb/2002:02:06:34
I have lived with Tourettes for 18 years now and it is nice to see a
web site dedicated to helping those who have just been diagnosed and to
help their families understand exactly what this condition is and how
it effects the individual who has it Bravo to you
 
Lindsay Johnson   19/Feb/2002:11:06:05
I found your site after searching for any information on TS. I am doing
my degree dissertation on the effects of TS on the rest of the family
but can't seem to find anything so if anyone out there would like to
give me an insight then please don't hesitate to mail me. Yours lindsay
Johnson
 
marcia   19/Feb/2002:10:40:32
My 11 yr old son has ts+. It took 11 months of pain to find an answer
for his behavior and being put in a behavior adjustment class. We
found the right doctor eventually - thanks to TSA-Houston. He's back
in regular classes - Honor classes. He is very lucky - his meds work.
I appreciate your website presentating things in balance.
 
Vernon Frazer   17/Feb/2002:12:20:59
 
Lissy   15/Feb/2002:13:37:28
I believe that Dr. Laura was extremely wrong in her offensive
comments. For example, her quote,"So you think it is correct to be
mad at them, that it's their wedding, that they'd like to not have a kid
who's physically under, uh, a lack of control and will scream out
vul-gar-i-ties in the middle of the wedding and you think it's wrong
to exclude them? Michelle, you smoke something funny", I find to
be very immature and juvenile. She should not be allowed back
on the air because of her inconsiderate behavior towards a
disease that people develop, not allowing them to have control
over their tics and certain outbursts.
 
Mrs. Hergerts 8th gr   15/Feb/2002:13:25:35
We all agree Dr. Lauras comments were cruel and miss informed
and she should be banned till she apologizes. So protest her
show dont listen to anything she says its completely idiotic.
 
khan   15/Feb/2002:13:23:00
dr laura is messed she must've been high she shouldn't be on air
 
Raymond Johnson   15/Feb/2002:13:14:55
I think that Dr. Laura is wrong for her comments and should be
banned until she appologizes.
 
Dennis page   15/Feb/2002:13:11:31
Dr. Laura was way wrong with her comments she should be
banned
 
Nanny   13/Feb/2002:12:05:56
Hi i have been posting on your message board and have learned a great
deal from it. One thing we know our children/grandchildren better than
anyone. I am raising my 8yo grandson (Bradley) with TS. Ocd.,
Opp.do.,sleep do.,ADHD.,emotional problems. I hope I can continue to
feel better about all this with your help and caring. Ihave learned
more here than from any dr. His tics do not bother me, the major
problen is the coprolalia, and we are working on that. Hope to get to
know you all and I am here to help in anyway I can also.
Linda Badman-bsyplmr5@aol.com-Palmer, IL
 
TSNW Information about Tics and Psychostimulants 12/Feb/2002:18:38:17
Journal-published information about tics and psychostimulants is
included in the link above.
 
Dawn   12/Feb/2002:17:53:07
My daughter was on Ritalin for 4 years for ADHD. The medication caused
her to develope Tourettes. After much investigation into the
medication and the company, I want to be sure that all parents are
aware of this fact and the other health hazards of ritalin and other
such medications.
 
Stacey Shotley   11/Feb/2002:15:20:29
My son Tyler has TS and has had it for some time now. He was DX in
2001. He is 10 y/o and is very intelligent almost to his detriment. I
read some of the comments by others in your guestbook and I've either
been there with him already or am going through that at this moment. I
can gladly say that Tyler is a wonderful, loving, kind child that is
liked by most. One thing we did at his school was to let the other
children know why he acts the way he does was by Tyler standing in
front of the class with one of the people that work with him and
together they explain to the class what TS is and that he can't help it
when he makes noise or can't sit still. This has helped him with
making friends in school. There are still the few that don't
understand or just wont try to understand that give him a hard time,
but he deals with it like a trooper! We love him very much and we are
very greatful that the school is so helpful. Thanks for letting me
sign your guestbook, Stacey
 
RedLady   06/Feb/2002:19:59:07
Hi...I am the mother of a 12 yr old male. He was diagnosed with TS at
the age of nine. He has gone 3 yrs without any meds...which we are so
thankfull for. But, here recently, he is having some serious upper
torso body jerks and snapping his jaw open and shut. This tic has
caused him to have serious jaw pain and we are currently making appt
to see a pediatric neurologist about this. He is also OCD, but is a B
honor roll student in the 7th grade. He suppresses the tics while at
school and when he gets home...all hell breaks loose. I really feel
for my young fellow, but am optimistic he will get the treatment
necessary to get thru this current tic. I know TS is inherited, but
my husband and I do not exhibit any signs of TS ourselves. We don't
know of any other family members with the disorder either. Well, this
is just and introduction of my family. I stumbled up on this website
and it looks very informative. Will definitely bookmark.
 
Heather Burnett   05/Feb/2002:13:46:44
My 3 year old son is showing several of the symptoms of TS. Clearing
throat,blinking,rubbing of his nose, an occasional head jerk. Some
days he's a perfect kid, usually a little hyper. Other days, well it
can get pretty bad. He has his first appointment on Feb. 22, 2002. I
stay possitive or try to. But I feel so overwelmed. And for a least a
year he has shown some selve harm such as biting himself. I'm not sure
what to do.
Thanks
Heather
 
meggin   31/Jan/2002:12:42:41
Hi, I visited your site because I am doing my senior project on TS. I am
really trying to grasp the whole concept of the syndrome. I can not seem
to fond much. Your site did help me and I thank you. Reading your guest
book helped too. Thank you very much.
 
Donna   29/Jan/2002:10:02:02
Hi, I have a 23 year old daughter, who has had TS. but has not been
dianosed with it by a doctor, when she played sports, and had physicals
by her doctor, all the doctor asked, when we explained what she was
doing," do you think it is a tic or something"? Well I had never heard
of TS until she got into college. TS has really become a real problem
now as she realizes it is hard to controll, and having a problem getting
a job. Does anyone know who to go to in the Boston area, she has no
medical insurance now because she is out of college. I would appreciate
any information out there. thank you
 
Anne-Marie   28/Jan/2002:07:55:18
My daughter Ashlee has just turned 9 and has had tourettes for just
over a year now. For the past 3 months she has been symptom free but
has just started a week ago with a new tic. She cant stop clearing her
throat and she starts school for the new year tomorrow and I am
concerned she will have problems in the classroom as it is very loud.
I will speak to her new teacher and I think I will have a talk to the
headmaster as well just in case there are any problems. The more
informed they are, the less chance she will have of getting
misunderstood. Last year her teacher was very good with her. This is a
great site and I will continue to log on and read other peoples
experiences. Thank God for the internet as it makes life so much
easier when we are trying to find out about the conditions such as TS.
 
KELLY   23/Jan/2002:11:57:07
I'M SO GLAD I FOUND YOUR WEB SITE. MY BROTHER HAS TS -&- MY MOM IS ALWAYS
LOOKING FOR BOOKS -&- ARTICLES TO READ -&- GET INFORMAION.
 
jackie   20/Jan/2002:22:46:32
hi i have a 11 years old daughter i was just told she has tourette i am
the panic mom all i want to learn as much as i can so i know the dr is
doing the right thing.I like to find out how she got this too so if any
one can help please email and put on email some thing about tourette i
would sure be please thank you for all the infor on the web site.
 
Heidi   19/Jan/2002:10:54:47
My son is 14 with tourettes. He currently isn't medicated by choise
The older he gets the worse his tics get and as he approaches high
school I get more worried for him. He doesn't like the medication they
put him on when he was 1st diagnosed(clonidine). It makes him very
tired and groggy! Is there anything out there that is less sedating
but can help his tics(even if it's just a little)? Please Help!! His
tics normally don't really bother him,however lately they've gotten
much worse.
 
Cheryl   19/Jan/2002:10:40:51

Your site is great! Thanks for all the information on Bi-Polar, also
all the wonderful links! Very interesting.
 
linda henson   18/Jan/2002:20:50:21
this is for my son jamie henson age 9 we cant find a doctor close by
where we live i dont know what to do
 
Maria   17/Jan/2002:23:17:31
Hello: I live in Costa Rica, my sister in Nicaragua told me about your
site. My son David is 11 years old. He has a problem of speech ( he
studders) since he started speaking, then he tics started about 3 years
ago. I didn't know about TS, and in this country there aren't many
doctors specialized in TS, in fact, there is only one that know of. He
diagnosed David with TS about a year ago, but I'm not satisfied,
becouse he dind't take any tests. I wanted to know if you can recommend
somewhere we could take him to take these specialized tests that I keep
reading about. I would aprecciate it.
 
Jody Tate   16/Jan/2002:23:47:19
WE are new at this also. My son is 11 years old and his entire life he
has had unusual mannerisms (that my husband and I adored, we always
just saw him as wonderful and fun). Teachers, though, had been
attempting to label him and medicate him since first grade. I am so
tired of defending this beautiful boy. Can't everyone else just look
at the heart and soul of this very loving child????

anyway, we are starting a new journey today. I have no doubt that I
am going to learn great things and that my son is on the road to his
destiny. I have never had a doubt that he is meant to use his life for
something.. He is just so beautiful.
 
Barbara LaValley   16/Jan/2002:09:12:38
My Son Devon was Diagnosed with tourettes in november of 2000. Since
then its been up and down. It seems like every other day he wakes up
with new tics.
 
Cappy   15/Jan/2002:23:18:25
My son has touretts, severely he is 12 , he endures other children
picking on him, fighting with him and even his father verbaly and
mentaly abusing him. I am so glad that there are web sites to promote
ts. and Holly wood well thats anouther story, they get me mad
sometimes. They portray TS as a cursing disease, and make fun of it.
Let one of the Hollywood producers kids have it and see how they will
feel. right!!!!!
 
diane distler   15/Jan/2002:10:28:36
i am a grandparent of a newly diagnosed TS patient. He is 9 yrs old
has ADHD and recently diagnosed with phono logical disorder and mixed
receptive expressive language disorder. This after spending 3 wks in a
psy. ward at Stoneybrook university Hosp. Actually I'm just venting
now because I just spent the morning on the phone with my daughter,the
mother of Justin, who was crying because she didn't know if she had
done the right thing forccing him to go to school after he begged to
stay home because he is enbarissed to go to class. I,m sure you have
heard all this before. Thanks for listening and having an open venue
so people like me can talk openly.

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