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Tourette Syndrome - Now What? Guestbook 2

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TSNW - TSNowWhat - TouretteNowWhat - Tourette Syndrome  Now What?
My son is 23 years old, when he was 10 the doctor told me he has TS, ever since this has been a roller coster to the family i really appreciate to family that are going thru the same that we are going thru please e-mail me it will be such a comfort...also i need names address and tel of doctors here in Puerto Rico that has experience treating TS thank you for all the help i can receive Laura Soto
laly15@prtc.net
HATILLO, P R USA - Tuesday, March, 27, 2001 at 04:24:21 (PDT)
My niece was just diagnosed with Tourettes. This site will help me understand more of what to expect. I will pass this information on to my sister. Thank You. Tammy
Tammy Willey
willey1@swbell.net Altus, OK USA - Monday, March, 26, 2001 at 13:46:38 (PDT)
lLOVE EVERYTHING BUT PLEASE I NEED TO KNOW TEL, AND ADDRESS OF DOCTORS HERE IN PUERTO RICO. THANK YOU
Laura Soto
laly15@prtc.net HATILLO, P R USA - Sunday, March, 25, 2001 at 17:02:10 (PDT)
Working...
Have a great day.
Jayne
jmlarsen@home.com Edmonton, AB Canada - Saturday, March, 24, 2001 at 17:27:16 (PDT)
Sorry - the Guestbook was busted for the first three months of 2001 !!  BB2
My 5 year-old son was just seen by his Dr. The Dr. said he has very mild symptoms of TS, which at this given point I would agree. I haven't found any literature that deals with explaining this condition to your child. I am having a hard time figuring out the best way to help my child understand why he does the things he does. I don't think he notices that he tics, but maybe in a few years he may notice, and I would like to be able to help him. Any suggestions, or websites that are useful?
Thanks!
My kids mom  shorning@tiaa-cref.org
Denver, CO USA - Wednesday, December 27, 2000 at 09:44:13 (PDT)
Your sight is very impressive but unfortunately, i haven't found information about tests for tourette genes. my spouse has tourette and the thought of having children with him conserns me. Can you send me information about that?
"m"   irit_x1@bezeqint.net  
israel - Monday, December 25, 2000 at 21:50:51 (PDT)
Your story describes our journey so well! When my son was 5 I suspected that the tics, vocal noises, etc. he was exhibiting were a result of T.S. (thanks to a Dear Abby article, I think). I approached his Dr. and was told (what else?) "don't be silly; it's nothing; he'll outgrow it". We, too, went through a very difficult series of events which included his father's back surgery, several deaths of very close family members, a major earthquake, a VERY major move, and his dad's diagnosis of M.S. I finally won the support of other members of our family to push our pediatrician to recommend a neurologist. This time (5 years later) the diagnosis was exactly as I thought. The Dr. was quick to recommend haldol(?). After extensive research, we decided to take the drug free route and see what would occur. The result after 2 years is that we hardly notice the tics, etc. any more. They're still there, to be sure, but we've accepted them, and his stress over "what's wrong with me" has diminished...seemingly so has the frequency and severity of the tics. As with your sons, he excels on stage, has won athletic awards, is a good student, and - most important at his age- has tons of friends, and is well respected by all adults who know him. We couldn't be prouder of him. If or when anyone looks at him "funny", or if they ask why he keeps blinking, shrugging, etc., he just says "I have something called T.S. Want to hear about it?"

Thank you so much for validating our own story.
Jann   jannl@att.net  
CA USA - Tuesday, December 19, 2000 at 13:50:10 (PDT)
I am now a senior in high school, and I started twitching when I was in 2nd grade. I had a teacher that year that would lock students in the closet if they were bad, I was a good student and never was, but that was the year it started. My parents brought me to my doctor and they simply said I would grow out of it, but ten years later, I am still twitching. It gets out of control to the point where my face feels tired. I stretch my neck, cough, sniff, clear my throat and my eyes blink, and my my right eye will twitch by itself-bringing up my cheek as well. I hate it and am embarssed, most people don't notice-and I only do when people say somehting. I would like to know if there is ANYTHING possible to lessen it, and destressing can';t be an answer, I live a hectic life and that can't change. I have noticed that I am fine from Friday afternoon until Sunday night, and once school begins they come out again. HELP!!!!! Even my boyfriend says there is nothing wrong, that I am just squinting to see-but that's not the case, but he doesn't see it-which I don't mind, but usually only my parents and relatives truly notice. But I still would love to hear anyone's opinion or suggestions...
Elena   Italian_princesse@yahoo.com
Stony brook, NY USA - Tuesday, December 19, 2000 at 13:08:54 (PDT)
Leslie Packer and her website are graeat..I would really like to see you add www.tourettesyndrome.org to your site, as they are the only organization in California which is avalilable to help parents and families of Ts children... www.tourettesyndrome.org is the official web page of the Tourette Spectrum Disorder Association, Inc. Tourette is usually NOT just Tics, and can manifest in myriad ways. I applaud your site, and for all the help you are to those of us who need help, support, and basic information... Dr. Comings' books are a great help, too! I cannot say enough good about a doctor who is knowledgeable, and who has been there for us and our children through very difficult times...
D. Imbler< deitsa@discover.net>
Upland, CA USA - Monday, December 18, 2000 at 11:58:28 (PDT)
Great website - the more information people have at their disposal, the better! To briefly touch on my story, I'm 30 years old, and have had TS since I was about 14. I was diagnosed with it two years ago (although I had pretty much self-diagnosed myself through internet research prior to that). I would say that I have moderate TS, in that I have mostly low-level vocal and motor tics.
As for my reaction, I've tried a few medications, including Zoloft, Catapres, and Klonopin. At times, I think that the Zoloft might be working, but as most people with TS know, it's nearly impossible to distinguish any therapeutic benefit from the normal waxing and waning of the symptoms. Essentially, I wanted to try medication to help free up my brain. I can control the tics (just barely!), but it takes quite a bit of energy to do that. I thought - hey, wouldn't it be great to use that energy in a more productive way? Thus my reason for trying these medications. I will continue to do this, because 1) different medications probably affect people in different ways, and 2) the Zoloft, while it seems to have some effect, also makes me too complacent about things in general (you might expect an anti-depressant to have that effect on someone who isn't depressed!).
So my advice to anyone with TS is to try different medications, but only if you really want to shift the efficacy/side effect balance. 

Ben 
Tuesday, December 12, 2000 at 15:09:16 (PDT)
My daughter was diagnose 1 1/2 yrs ago. at age 6 1/2yrs, after much denial or lack of knowledge on my part. I thought she had OCD. I was asked many times if I might think she had TS, and I of course said NOT A CHANCE! No one at that point had really even seen her, only my description of what she did! I immediatly became obsessed with looking up info on the web! I was lucky and hit up with a group on the web that was made up withmany many parents willing to share, Most of the info. scared me. But with a specialists help we knew what yto take with a grain of salt. I was able to cionnect with a few parents that were on the same level as me! He actually told me he was very happy I was looking up so much, It made me better prepared to ask him questions. Usually they yell at you for being paranoid or being overly protective and challenging there specialties> I was shocked that when she had presented with an infection on her face, that I had thought was a cold sore, and increased asthma problems, did I find out that she had strep skin, and the strep had exacerbated the symptoms of TS! I had been noticing and questioning for year! We had seen a Dr. that night that was on call, thank god, because it seemed not many people knew about this corellation yet and we still would have gone on wondering why she did the things she did! Humming, grunting, throat clearing, bunny noses, neck pooping, punching herself..........many "tics" very young and considered "CUTE" until the popping, punching, grabbing of privates and grunting. I was put at ease by the neurologist and many parents. I still read alot and still need more understanding. But I feel better that there are so many poeople out there with so much info, that we can all help each other. Thanks for the great site and links..........I too believe in no meds when not necessary after having gone through the med thing with my older child with ADD and using many medications for 8 yrs. Sheis now drug free and learning to deal with her condition, just as I hope this child will be able to do it with out any meds! Thank you very much!
Amy Godbout <AJ66BME@YAHOO.COM>
South Hadley, MA USA - Sunday, November 26, 2000 at 21:21:38 (PST)
Hi and thanks for letting me read your story. This is an excellent website and very useful one. I am writing a paper about Tourette Syndrome for a psychology classed named "Disorders of Exceptional Children". The class is truly about spectacular and exceptional children. You've given me plenty of insight to write my paper on. Thanks!! I truly wish your family and exceptional son mounds and mounds of luck!!! Good Luck again! --- A.
A. Streets <Alstree@prodigy.net>
USA - Tuesday, November 21, 2000 at 08:26:51 (PST)
I would just like to know if there are any adults out there who developed ts. as an adult. I am 31 and began having tics when I was 21, they started about 6mts after I had my first child. I really have never been diagnosed with anything. I guess all the doctors I have been to have very little knowledge of Touretts. I pretty much have decided thats what I have after 10 years of tics. I have head jerking arm flaping, eye blinking, a few vocal tics such a grunting but no really bad vocal. In the begining I was unable to talk without a lot of trouble. I was tried on Haldol, depokote, clondine, klonpin, valuim, as well as some eplipsy meds. none of these seemed to do any good. I did have some major sideeffects with haldol. At the present time I am on luvox and have done pretty well with it it has calmed them down a bit but not completly. Has any one tried anything that has really done them a lot of good? If so please let me know. My 11 year old son is also ticking. but I have not tried him on any meds. I am afraid of him having to go thru the hell I did with side effects.
Melissa <mlskaggs2@juno.com>
Lexington, OK USA - Monday, November 20, 2000 at 11:34:36 (PST)
How can a person with TS overcome it. Are there any websites that a people can talk to other people about their problems. Or do you know any email address that I can talk to to related to their TS. I hate Tourettes Syndrome and I wish it could away because people make fun of me in school. With my Tourettes Syndrome I have blinking eyes, stuttering, clearing throat,smiling that I can't help, frequently sniffing,hard to wake up, and learning disablities. I learn slower than other students in my classroom. I write slower than people in my classroom. I think slower than other students in my class. It takes me a longer time to get something done. Other students would say something like that was a easy test then turn their paper in and would be like "you still working on your paper that was an easy test." Then I always say that's because you write faster than I do. My blinking eyes don't effect me from driving. I can drive but I do still blink. When I smile, blink, or stutter people say why do I do that or say stop do that. When I was younger, a student would do something behind the teacher's back and I would look over there and laugh because it was funny then the teacher would turn and the student would stop laughing and she would think it was me because I was laughing then she would say if I am sending him to the Principle office why is he still smiling. Or sometimes I would miss class and get set to the office for smiling because the teacher think I would be playing around with another student. She and students would ask me why do I smile so much and I didn't know so I said "your face look funny" I thought that was the reason until they would make fun of me like you act like Beavis and Butthead. Then they would laugh I would just sit there and smile even though I was hurt in the inside but I could never stop smiling. And I still have the problem now.
Julian <LilBowWow2468@aol.com>
Cleve. Hts. , Ohio USA - Saturday, November 11, 2000 at 23:09:26 (PST)
I believe our son is showing signs of TS, his father has adapted to the lifestyle, and we do not see any signs, but our son seems to be touching his legs quite a bit, and clicking of the tongue, and incidents of behavioral issues have been seen, for instance his clothing has to be perfect if not he will go into a rage-like episode, but 2 minutes before the rage he is hugging and kisses us.
Marcia Ney <NeyJacoby@msn.com>
Lebanon, pa USA - Wednesday, November 08, 2000 at 18:15:40 (PST)
I thought my son had a "blinking" problem. I would always ask him if he had something in his eyes or if he needed eye drops. One day his teacher told me that she tought my son had an attention problem because he could not stay "focus". I made an appt. with the Dr. He told me that he might have a mild case of TS or petite mal with a tic. We made our appt with the neurologist, and after reading your website, I'm more prepare for my visit. I can keep an eye on him and inform the Dr. better. Thank you.
Becky <rlee411@yahoo.com>
Ft. Lauderdale, FL USA - Friday, November 03, 2000 at 08:47:43 (PST)
Thank you so very much for you web site. My son is 12 and newly diagnosed with TS. It is devestating to him as well as the rest of my family. If any one a has any suggetions as to help us all better deal with this please contact me. I feel as though the Dr. we have is using my child as a guniea pig for meds. nothing is helping as of yet. I would greatly appreciate any feed back. Just as all of you are I am a very concerned mom and I am very thankful to have found this site.
Shelley <BIbshel@aol.com>
Richmond, Va USA - Friday, November 03, 2000 at 07:48:21 (PST)
Im just writing this to thank you all for solving a problem ive had for years. After reading your site, i suppose im a 'mild' sufferer. all the symptons described sound all to familiar, yet im so glad im not just a freak. After being called noddy, and suffering numerous bullying instances at school, im now at ease to discover im not alone. I only wish id known about it earlier in life. im going to try nicotine patches to see if they work, if not take some of the advice listed on yor site. i only came across this subject by fluke, and thanks to some good friends, and loving family ive got through the worst of it. From someone who knows it is possible to lead a life dispite of. Thanks to all.
Mark Gates <mark.gates@talk21.com>
London, England - Thursday, November 02, 2000 at 16:35:08 (PST)
Thank-you for your valuable information. My 5 year old son had just been diagnosed and I can use all the information and help I can get my hands on!
Natalie Caddell <whenpigsfly@theriver.com>
Claypool, AZ USA - Tuesday, October 31, 2000 at 15:07:14 (PST)
I don't know if I am really early noticing this thing that is going on with my 18 month old daughter or not. However, just reading some of the information on this web page and some others, I was wondering if my daughter could be displaying early signs of TS. She blinks her eyes seemingly uncontrollably, and she holds her chin to her shoulder a lot and it also seems like she has spasms with her mouth stretching out into what would look like someone just showing their bottom teeth and the cords on her neck are coming out with a lot of emphasis. If that makes any sense! She likes to clown around a lot, so I don't know if she is doing these things on purpose or if there really is a problem. I haven't read anything on anyone being diagnosed with TS as young as 18 months, but I don't know if anyone would notice these things going on before their child could even speak well. She doesn't have any verbal tic yet, but then again, she can't really say a whole lot either. If anybody can give me some advise, I would really appreciate it. Please email me at my email address.
Adrienne <Craftina@aol.com>
Goldsboro, NC USA - Saturday, October 21, 2000 at 23:13:08 (PDT)
Thank you so much for such an informative and soothing site. You have helped me through my panic stage with a new diagnosis for my wonderful ten year old son, and I am much better prepared to advocate for him and help him through this difficult time. Thank you for thinking of all of us who needed to know this information.
Benita Winslow <Bensma@prodigy.net>
Detroit, MI USA - Saturday, October 21, 2000 at 09:42:33 (PDT)
How wonderful to find a website that is so upbeat. I have a lot of trouble not getting caught up in the negative during those times when my son's TS/ ADHD/ OCD and rage cause major conflicts at school. I'll know in the future to come here, read some "funnies", laugh a little and remind myself that things are not "so bad". Thank you.
Lee
Regina, SK Canada - Tuesday, October 17, 2000 at 12:11:40 (PDT)
i have a 7 yr old little boy, already diagnosed addh and is currently on ritilin. he experiences tics in the throat area and recently began having black streak like discolarations on his chin area. our doctor is advising us that he may be bi-polar and certainly some of his actions and symptoms lead in that direction. my question is does anyone know or have delt with the black spots? i am worried about this but haven't consulted with our doctor afraid of his answers. our child needs us and i don't want dfs involved unless he becomes such that we can't handle. any help would be appreciated rae@abcs.com
rae <rae@abcs.com>
indiana, usa USA - Tuesday, October 10, 2000 at 17:22:09 (PDT)
My 13 year old son was diagnosed with Tourettes and mild ADHD. Looking back he has had tics for many years, the first approx 6 mo. were hell for us. There was no reason for the severe onset of symptoms that he had, only guesses as to what could have made the tourette symptoms escalate. Some teachers accused him of trying to get attention. They couldn't understand why sometimes he was fine, other times he couldn't concentrate long enough to know what they were discussing in class 2 minutes after they were finished. Not to mention his vocal and motor tics were very embarrassing to him, kids made fun of him constantly, only making the situation worse. I was obsessed with searching for information and a doctor. A doctor we can not find, (that knows anything about tourettes). He is currently taking ORAP, and the school tells me he's a different kid this year. He is a Jr. High Football team captain and elected to the student council. We still deal with a few tics, and we still struggle at times with grades, we take one day at a time, and mom is trying not to obsess any longer.
Cynthia <chuhman@neb-sandhills.net>
Merna, Ne USA - Tuesday, October 10, 2000 at 08:18:10 (PDT)
MY SON WAS DIAGNOSIS WITH TS IN THE PAST YEAR(MARCH 2000),WITH REPEATED VISITS TO THE DOCTOR AND PHYSCOLOGIST WE FINALLY FOUND OUT THAT HE HAS PETITE MAL DISORDER AND TS.MY HUSBAND AND I WERE VERY SCARED NOT KNOWING WHAT THIS WAS. WE STOOD UP NIGHTS JUST WATCHING MY SON (AGED 8YRS)AT TIME OF DIAGNOSIS WAITING FOR A SEIZURE OF SOME SORT,NOTHING HAPPENED ,PHYSCOLOGIST SAYS IT'S JUST TICS.HE SOMETIMES SEEMS WITHDRAWN AND CHILDREN ARE JUST MEAN NOT KNOWING WHAT HE HAS. I HAVE A 6YR OLD SON ALSO..NO TICS SO FAR.THANK GOD. CAN YOU PLEASE HELP US DOCTORS HAVE MY SON ON LAMICTAL FOR SEIZURES WHICH I DON'T THINK HE HAS...EEG & MRI SHOW SOME BRAIN ACTIVITY ,IS THIS COMMON ? ARE THERE ANY SPECIAL DIETS,OR MEDICATONS.OR PRAYERS I SHOULD KNOW ABOUT I'M DESPERATE..RUNNING OUT OF PATIENCE!!!
DENA M. ROMERO <ROMERORAIDERS>
STOCKTON, CA USA - Saturday, October 07, 2000 at 18:54:08 (PDT)
Thanks for your page. I cant tell the differance between Sydenham Chorea and TS in my son .5yr old . Can you help me please. Art Smith
Art Smith <artsart@yahoo.com>
modesto, ca USA - Thursday, October 05, 2000 at 23:43:20 (PDT)
I have a 12 yr old son who was diagnosed last year. For several years he had the eye blinking and then developed the noises. We have tried numerous medication and are now on ORAP and it is working well for the tics, but I feel it has triggered panic/anxiety attacks just during school, other times he is just fine. Thank you so much for this website it is great to have others to talk with.
Paula Ward <wardpy@appstate.edu>
Vilas, NC USA - Thursday, October 05, 2000 at 11:37:37 (PDT)
My 9 year old son has had tics (eye blinking, grimacing, grunting) for as long as I can remember. Just last week, he started saying profane words every few seconds. Everything I've read on this website makes this sound uncommon. I've been encouraged by the comments that the tics will wax and wan, but no one seems to be experiencing the profanity. Does it go away too? We do not have a diagnosis yet, but started the clinic visits yesterday. I'm still in the panic stage and am trying to soak up any information I can. Please let me hear from you!
Lydia Noll <lydianoll@hotmail.com>
Siloam Springs, AR USA - Tuesday, October 03, 2000 at 09:36:47 (PDT)
My 9 year old son has been having slight facial ticks for 2 years that have all of a sudden worsened from simple ticks to more complex things involving his neck, eyes etc. He is also starting to become much more active than ever. He has always appeared to have been a "normal" child and all of a sudden our lives have changed and in the last few weeks it all seems to be coming to a head with no apparent reason. There has not been any changes to the household, no traumas, etc. Our doctor says that it is just stress and prescribed a valium type med that I refuse to put him on after only a 5 minute office visit. Do these series of events sound familiar to anyone who's child has been diagnosed with Tourette's? Please help, I am so lost. Thanks!
so sad <m2077k@aol.com>
USA - Friday, September 29, 2000 at 19:37:08 (PDT)
neighborhood! My son who is 10 was diagnosed with TS, ADHD a year ago, it has been quite a rollercoaster ride. Prior to my knowledge I thought that I had done something wrong as a parent, after new received knowledge (and experience!) it has become much more easier to address. With the change of meds and literally fighting with school after school I finally put my foot down and demanded the school district to help. We are currently pleased with his new found school and are pleased to say that we have accomplished a triumph! Your site is wonderful! Thank you and God Bless!
Deedee Reynolds <Puppiecatcher@aol.com>
Hawthorne, ca USA - Tuesday, September 26, 2000 at 20:25:56 (PDT)
Our 4-year old son was diagnosed with TS in June 2000, and his symptoms seem to be worsening over time. I am feeling overwhelmed and depressed, and I need help on learning coping skills. Please help me to help our son!
laurie gauf <rlgauf@msn.com>
burtonsville, md USA - Sunday, September 24, 2000 at 07:55:56 (PDT)
I took my 12 year old son to a Neurologist last week. First he told me he had all of the classic systems of TS. Then he told me he was fine. I walked out of there very confused and kicking myself for not asking more questions. But now I realize my son is fine. When I asked him if kids in school teased him, he said "No, they just ask me about it." Thanks for letting us share.
Sandy <gracie29_57@yahoo.com>
Fl USA - Thursday, September 21, 2000 at 17:56:35 (PDT)
My son start having problems with his friends at school, how can I aproch this situation with my son, i know this is the bigining, how can I tolk to him to make him not feel bad about his tics. Please I need help. Thanks
cecilia <ceciliags@aol.com>
springfield, va USA - Thursday, September 21, 2000 at 10:55:44 (PDT)
Just wanted to say a BIG THANK YOU for the fabulous site. I have a 9 year old son who has not been diagnosed despite blinking, neck thrusts, and hiccups. He also has asthma so some coughs/throat clearings may be due to asthma or TS. My daughter has a different neurological syndrome so I was very concerned but after visiting your site, I am much calmer. Except for occasional rages, my son does well in school (he is very highly gifted) but he is very sensitive and has difficulty with stress or when things don't go the way he wants. I now see how these symptoms fit in with TS. Your claming words have convinced me that we do not need an official diagnosis at this time but if we need one in order to secure accomodations at school,I will persue it. I know that my son does have TS but that he can live a full and wonderful life. Thanks again for taking the time to help the rest of us.
Peggy <peggy620@aol.com>
USA - Thursday, September 21, 2000 at 10:00:22 (PDT)
My son was diagnosed with TS last spring. His tics have changed a lot but now seem to be worsening. He has started to stutter very badly and repeats words over and over before getting them out. He has not been on any medication yet but is being teased once in awhile. We feel overwhelmed by this at the moment. Does it make it better to explain to his class what he has? I'd like to hear how other people dealt with this. He can hardly get his words out at the moment. It's heart breaking to watch a boy who couldn't stop talking have so much trouble saying even one word. Your site does give us hope. Thanks.
Wilma in Ontario <kwk.rauwerda@sympatico.ca>
Chatham, Canada - Wednesday, September 20, 2000 at 18:12:39 (PDT)

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