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Tourette Syndrome - Now What? Guestbook1

Thank you for visiting my Original Guestbook Entries.   To keep browsing the TS - Now What? website, just close out this window from your browser or click here.   TSNW - TSNowWhat - TouretteNowWhat - Tourette Syndrome Now What?
I am a single parent of a 5 year old boy who i think has the syndrome i'm very frustrated about all these things .I've read your Page and it is very comforting. Please help me learn more about the Tourett Syndrome. Thank you very much
Rommel Soriano <mhel21@aol.com>
Daly City, CA USA - Wednesday, September 20, 2000 at 17:38:04 (PDT)
Hi! just visited your site, I think it is has a wealth of information, and support advice. Love it. My husband and daughter of seven...both have Tourette Syndrome, We are 99% certain although they are of yet undiagnosed...but we are in that process at the moment. If anyone can offer me advice it would be great. Red Irish. x
Red Irish <sleepless_in_seattle@justsassy.zzn.com>
Scotland - Wednesday, September 20, 2000 at 05:44:59 (PDT)
This was interesting. I have a 10 year old son with Tourettes, OCD and ADHD. He is extremely oppositional. He has a hard time doing schoolwork and he has a hard time socially. We have tried almost every drug there is and we are still looking. If anyone has any suggestions, please e-mail me.
Bonnie <BBK0706@aol.com>
Cleveland, oh USA - Tuesday, September 19, 2000 at 20:23:27 (PDT)
Looks good. I like this website. It has alot of info on TS. We need more sites like this,
Billy Granfield <n1yoq@mediaone.net>
Manchester, NH USA - Tuesday, September 19, 2000 at 15:17:01 (PDT)
My daughter has not been diagnosed with the condition yet but she has the classic symptoms. Ive taken her to the doctor and he has told me only that she will grow out of it. It's been 3 years now and she still suffers from the same symptoms, but they have gotten worse. Im so glad i finally found your web site so that i can understand what is wrong with my daughter and not have to go through the hell of missunderstanding any more.
Julie Carson <rayandj@aol.com>
Sandy, Ut. USA - Sunday, September 17, 2000 at 17:47:55 (PDT)
I love this sight but I need help asking a question. My e-mail is wsj0128@aol.com can somebody please e-mail me. My son is 7 and the doctor just told me he has ts through my talking with him. I just need advise. I love this sight. This is the only one I have been to.
Wendy <Wsj0128@aol.com>
NY USA - Saturday, September 16, 2000 at 05:51:18 (PDT)
Do people/childeren get social security medical coverage with this disorder?
Laurie Snyder <LLsny@yahoo.com>
irrigon , oregon USA - Thursday, September 14, 2000 at 13:28:58 (PDT)
My 8 year old son was digagnosed with TS this week. It feels good to finally get a name for this. I have known for two years that he has it but I never could get anyone to name it. I feel bad for him because I hate the fact that he may get made fun of. Other kids can be so cruel to the kid who has problems. I can forsee years of counsoling. I am aslo confused about this disorder is it mental or phisical, a disease or a disorder. If any one can help please do. thankyou
Laurie Snyder <LLsny@yahoo.com>
Irrigon, oregon USA - Thursday, September 14, 2000 at 13:17:33 (PDT)
What a blessing all of these letters have been. My daughter was diagnosed with T.S. about 1 month ago. She turns 10 next week. Now that I know what T.S. is, I know she has had signs of it for many, many years. She had already been diagnosed with ADHD and OCD previously. Then about a year and 3 months ago the tics started. She is extremely bright, but is very immature socially. Yet, she has been blessed with several close friends that accept her and "protect" her from others. She is also blessed with a great church family that love her dearly. But, her motor skills seems to be going backwards... is this part of T.S.? Her handwriting ability peaked last year in 3rd grade and is now increasingly getting worse, as well as her gross motor skills. She has started Taekwondo, which has helped alot. I wish there was a support group in our area, but have not found one yet.
Susan Brown <bnsbrown@juno.com>
Barling, ar USA - Tuesday, September 12, 2000 at 21:17:11 (PDT)
I am 29 years old, and I have Tourette Syndrome. I was diagnosed years ago, and was taking Klonopin. I still have the tics. It is very hard to try and not have a "tic" when people are around. I have not had the medication since I was a teen. I still find it very difficult, and am afraid to see my doctor about this disorder. I think he may think I am wrong or something. I do appreciate your website and it's new information. Thank you,
Theresa~Marie Delaney <Breeze1880@aol.com>
Knoxville, TN USA - Tuesday, September 12, 2000 at 04:31:50 (PDT)
We have a 12 year old son who was diagnosed with TS 2 years ago. We've been to Boston Childrens and Toronto General and both hospital specialists have encouraged us to start him on Risperadone. We have tried several other medications such as clonodine, paxil, luvox. Has anyone out there ever put their child on this Risperadone. If so, can you please give me your comments? Ronnie
Ronnie Lewis <rlewis@alre.bm>
Bermuda - Monday, September 11, 2000 at 06:22:19 (PDT)
Hi! Great to talk to you all.My hero is 12 and yes he has the tic attack.It took 5yrs to get a diagnosis.Actually my husband and I sold our house and went back to University and made the diagnosis ourselves. We had seen so many doctors and argued with sooo many teachers we knew it would be the only way.Finally 1 month ago we were told what we had been telling everyone for years.Jack is a real inspiration and i know you are all lucky to know someone just like him.
trish <khuti@hotmail.com>
brisbane, qld australia - Friday, September 08, 2000 at 02:43:56 (PDT)
Thank you for your website. It is a great relief to know there are so many others out there with the same questions and fears that I have experienced. My 8 year old son was diagnosed last year. His tics are all classic, with the squeaking, lip smacking, jumping up and down. I have noticed an increase in his tics when we mention baseball. He lives for baseball and excels in it. He carries his glove around wherever he is, and recently played on the all-star team in his league. Everyone always comments on his energy level. He gets the whole team excited with his enthusiasm. Although, we realized that the mention of baseball eacerbates his tics, I would never dream of taking baseball away from him. It is his true love.Some day you will all read about Chad in the pros and how he overcame his Tourettes. Thanks again, for the great site.
Michele Timmins <Tilt1up@aol.com>
Encinitas, CA USA - Tuesday, August 29, 2000 at 16:57:39 (PDT)
My son who is three years old was just diagnosed with Tourette Syndrome. I found your site to be very useful and helpful to me. It has really put things in better perspective for me and has put my mind at ease. I do have one concern that maybe you can help me with. Whe my son was 10 months old he had a mild reaction to the measles, mups and rebella immunization. It was after that I notice that he started with the tics. Could it be possible that the immunization might somehow be lincked to causing tourettes syndrome. Do you know if any reserch is being done on this. I am very concrned about giving him his 2nd series of shots, which he is suppose to have at 4 years of age. I do not know if I should still give him the shots or wait until later on to give it to him. Can you please find someone or some type of material that could possibly help me with this question. I do not know where to look. Thanks in advance Ann-Marie Zenetos
Ann-Marie Zenetos <jim.zenetos@sympatico.ca>
Toronto, ON Canada - Tuesday, August 29, 2000 at 08:07:48 (PDT)
Found your site for the first time today. Very informative and very well done. Our son is 17 and was diagnosed with TS when he was 6 years old. We took him to the Dr. thinking he had allergies since he was continually clearing his throat. Our family doctor was called out on an emergency the day of our appointment, so we had to see his associate. His associate immediately diagnosed TS. I fell apart since I had just viewed a report on one of the major network news magazines of a man who couldn't even function in society because of his TS. What a blessing it was though, that this Dr. was the one to see us that day. He was reassuring since he daughter, too had TS. Well, 11 years have passed and we have made it through. Our son is a well adjusted "normal" teenage boy with lots of friends. He excels in sports and is third in his class academically, taking accelerated classes. His friends have accepted his tics and just know he "moves" sometimes. He was back to his neurologist just last month and the neurologist asked him if he had any friends. Ross said he had a lot of friends. The Dr. asked if they made fun of him. Ross said no, that they all accepted just as he was. The Dr. turned to me and said he thought he was well adjusted and there were no problems, so he thought maybe he should treat me and not Ross. That sure helped to put things in perspective for me. He is much more adjusted about this than I have been. I now try to look at what a great kid he is and accept him like every one else has. I was worried about his acceptance in our society today, but he has made the adjustment without much pomp & circumstance. There is light at the end of the tunnel and a great life ahead.
Jan <church@smdcog.org>
Kennard, IN USA - Friday, August 25, 2000 at 07:10:29 (PDT)
This was my first time to visit this site.I think that this is a great site and I look forward to being able to visit it a lot more.We have a son who is 9yrs old he was diagnosed in July of 2000 with tourette syndrome.He has had both motor and vocal tics for quite sometime.If there is anyone out there who would like to make a comment to us then please by all means feel free to send us an e-mail to us at this e-mial address: jamiegirl_65@Yahoo.com. THANK YOU
Jamie Sparks <jamiegirl_65@yahoo.com>
Grandview, MO USA - Thursday, August 24, 2000 at 13:12:06 (PDT)
Excellent site. As a newcomer to the syndrome my awareness has increased tenfold and I feel much more balanced in how to approach the situation with our 8 year old. Keep up the good work. Regards
Frank Smyth <flsmyth@eircom.net>
Dublin, Ireland - Wednesday, August 23, 2000 at 07:09:53 (PDT)
It is wonderful to have a place to write your heart out, and share experiences with others. My son is 36 and is terrified of the work world and has a reluctance to learn the rules of the work world. The tics are "piece of cake" compared to the inability to grow up. Does this ring a bell for anyone? I t is wonderful when families are full of love, and can give love and support to their children. Some of us are not so lucky, but have our own anger to deal with, our own marital problems and different points of view from our spouses. These are the problems I face. Thank you for listening. I am biancae@hotmail.com
biancae <biancae@hotmail.com>
Ann Arbor, MI USA - Tuesday, August 22, 2000 at 09:35:32 (PDT)
Thank you for this wonderful and positive site. We have a 10 year old boy with TS and an 8 year old girl with ADHD. I wish our teachers and peers could be reached out to so they could see how great our kids really are and how wide spread this dx are. (OUR KIDS ARE NORMAL!)
Tracy Nelson
Fayetteville, AR USA - Thursday, August 17, 2000 at 12:30:25 (PDT)
What a great site! My 10 year old son has TS and 8 year old daughter has ADHD. We have a very hectic household, but lots of love and patience! Thank you.
Tracy Nelson <davethevike@webcombo.net>
Fayetteville, AR USA - Thursday, August 17, 2000 at 12:27:03 (PDT)
i am very grateful to have found your site. my son was diagnosed about 6 months ago at age 7. he is currently on clonidine and it has helped his tics and state of mind. i am mostly grateful that i am no longer alone. thank you for all you do for all with ts and all the associated disorders.
gina lunardo <markie3001@aol.com>
plymouth, ma USA - Tuesday, August 15, 2000 at 17:10:04 (PDT)
I thank you for this informative and reassuring site! I am particularly interested in people's experiences with explaining TS to their children. My son is now asking questions about why he does what he does and what can be done about it. Any thoughts would be most appreciated.
Fern Fisher <Fernfisher@aol.com>
Brookline, MA USA - Monday, August 14, 2000 at 18:39:15 (PDT)
How do I thank you for your web site. My husband and I searched and searched for a site which pertained to us. My son was diagnosed with TS in 1999. He is not severe, has never been medicated, and has none of the other things that ofter go hand in hand with TS. (OCD, ADHD, ADD, etc.) Our major obsticles have been the emotional toll that TS has when he is experiencing Tic episodes. He is now nine years old, a loving, happy boy, who when he is asked why he does "that", he simply states that its something he can't help, and that it doesn't change who he is. At its worse, when none of us understood it, when his tics involved head, shoulder, eye movements, and briefly went into vocal tics,he sometimes couldn't fall asleep, and would ask, why has this happened to me. As a mother, my heart was broken. His subsequent episodes have never been as acute. Although I'm not quite at the "so what" stage, when he has a cycle of Tics, I no longer feel like I've been punched in the stomach. My son has learned that talking about what is going in with him, and trying not to worry when the tics are presenting helps him. Thank you from the bottom of my heart for your site. It offers so much more than the medical sites which so often did not relate to us, and did more to scare us than help us. Each day I remind myself that I can move from Now What to So What. No there yet, but getting closer each day. Thanks.
Danielle O'Connor <wderm2k@gateway.net>
Gloucester, MA USA - Monday, August 14, 2000 at 14:19:19 (PDT)
I have two boys,18 &15 & have just come back from yet another visit to have my 15 year old son Educationally assessed. WE have spent many years dealing with the behaviour of both boys, the eldest who is always loud and knows everything. He has mild facial tic's and a sniff. My husband has a constant nose twitch like a rabbit and a sniff. My youngest son Liam has been ill for most of his life having suffered Servere Oesophageal Reflux then contracting Bacterial Meningitis. When i read Marie ben92990 i had to walk away. I am so lucky to still have my son. Liam has had numerous cat scans, hearing tests, auditory testing , educational assesments, scopes up his nose down his throat, you name it every whole they could find they have put something in there. I have only been home from the Specialist for a couple of hours and got straight on the net, which is also very new to me. I am feeling very numb at the moment but it is also a relief to know that we know more about the hell Liam goes through every day. His tied of the teasing at school from other children. Liam has servere head and upper body tic's, as well as coughing continually. We are lucky that he does not verbally yell out. Im sorry i'm not sure of what things are called. Liam is the opposite, very withdrawn. With tears pouring down my face I say thankyou for giving me hope. Lyndelle.
Lyndelle Jeffrey <lyndylou61@hotmail.com.au>
Anglesea, Vic Australia - Sunday, August 13, 2000 at 23:28:33 (PDT)
Great website, wish it had been here 4 1/2 yrs ago when my now 8 yr old son and I were first diagnosed. You've done a great job and I will add your sight to my TS collection of sites I pass on to parents of newly diagnosed children. Congrats.
Kathy <IMLaffin@aol.com>
USA - Saturday, August 12, 2000 at 15:55:39 (PDT)
my son was just diagnosed with ts he is four years old and has had the motor tics most of his life it wasnt until that he started having the vocal tics that i noticed something was wrong. his motor tics are flailing his arms and scratching on soft surfaces ect. thankyou for your informative site
caroline isern <grannycal@hotmail.com>
USA - Saturday, August 12, 2000 at 08:40:48 (PDT)
Blessed, I just read your guestbook again! Your website has reached so many in a wonderful way! Words could never adequately express how much you have helped me to evolve to where I am regarding the TS dx for my 3 children. Your persistence in assuring accurate info is available in the cyberworld helped me to pursue much needed answers for my daughter. *Thanks* is a grossly inadequate word. Always, TreadinWater
TreadinWater <TreadinWater@aol.com>
USA - Sunday, August 06, 2000 at 14:52:45 (PDT)
Blessed, I just found your website. What a wonderful gift to all with TS and those who love them! My son, Alan, is now 12-1/2 and doing very well. His brother, Brian, is 9, and just saw the neurologist this week for a dx of probable TS. Didn't faze me a bit! His tics are so minor that we are going to forgo the meds for the time being. Attitude is everything - TS-So What!
Singer <fmbegly@hotmail.com>
nr Pittsburgh, PA USA - Saturday, August 05, 2000 at 20:45:13 (PDT)
I am glad to find your site. I'm an adult diagnosed 1 1/2 years ago, not with TS, but with Chronic Motor Tic Disorder. The reason I am contacting you is that after researching TS, I have found that my condition is EXACTLY the same as TS, except I don't have a vocal tic. My research back then was what prompted me to finally see a doctor about my tics, which I didn't understand. My mother has them too, as I found out when I finally talked to her about all this before I was diagnosed. She also has OCD and sleep problems. I have mild OCD, sleep problems, and what the neuro. defined as "ADD tendencies." My question to you is, do you know of any local support groups in my area? I'm in Plainville, Massachusetts. Thank you. Valerie
Valerie Cronin <CrnMchl@aol.com>
USA - Wednesday, August 02, 2000 at 09:21:39 (PDT)
First of all, congratulations of being chosen Member Site Of The Weeek....strap yourself in, if your week is anything like mine was...lol...I was chosen two weeks ago, "The Catt Box" and on Sunday alone I had 776 visitors to my site..I wish you much success. I had a good friend years ago with Tourette Syndrome....and I barely noticed. Having been a double amputee, myself, I know what it's like to not want to be defined by my physical disabilities....there is much more to me. "Timmy" also had an artificial leg. I noticed that his "tics" would increase with excitement or anxiety, but that was just "Timmy"....he didn't make a big deal of it, so, we didn't make a big deal of it. Having a physical disability myself has taught me to not focus my attention on others with "differences"....I would ask questions so that I could be informed....then just got on with the friendship. I am so glad you have this site. I think you have done a great job with it. Keep up the great work. Blessings to you and your family.... The Catt
catt scruggs <catt356@home.com>
Boiling Springs, sc USA - Saturday, July 29, 2000 at 07:43:12 (PDT)
I have a story to submit but can not find your email addy????
Snuggle bear <ka1yon@mediaone.net>
Uranus, MA USA - Monday, July 17, 2000 at 18:06:32 (PDT)
Sincere thanks for all the hard work you put into this website. We are in the discovery (and panic) modes regarding our daughter's TS symptoms... and after much reading, I expect for now that your website will be of greater help than the medical community! Reflecting on how the internet has changed our lives by putting so much information at our disposal... I find myself, and all the people I know, anything but normal. We are all unique and would be better off surrounded by more positive reinforcement like your readings. So what is normal anyway? ;-)
Steve P
Alpharetta, GA USA - Sunday, July 16, 2000 at 10:19:14 (PDT)
Glad to find this site. I need all the info and support I can get. Husband has undiagnosed TS, OCD, ODD, ADHD, and who knows? Extremely difficult situation. Denies anything wrong. Children: 21 y/o ADHD, Mood disorder, 26 y/o son-in-law ADHD 18 y/o ADHD, ODD, 15 y/o possible ADD, first 3 from previous marriage--dad bipolar--next from current marriage 10 y/o TS, ADD, Dislexia 8 y/o TS, ADHD, 7 y/o TS, rage attacks. Youngest only one diagnosed. Working on others. No insurance. I am sure I will greatly benefit from this site. Will add to favorites. I found it looking for "Pass the Prozac" AWARD.
Mary <carpetgal_98@yahoo.com>
N/A, TX USA - Friday, July 14, 2000 at 17:45:39 (PDT)
Please check out these websites: http://ourlittleplace.com/tourette.html AND http://www.feingold.org/
Kristy <kumite2@hotmail.com>
N/A, N/A USA - Saturday, July 08, 2000 at 22:18:03 (PDT)
Your outlook on TS is very refreshing. My son's tics were very severe last yr at this time, but have calmed down enough to be called mild. Reading your site has helped to put our lives into perspective. Thank you.
Lorraine Black
Ontario, Canada - Wednesday, July 05, 2000 at 18:40:06 (PDT)
I ALWAYS refer people to your web site because you have a wealth of knowledge printed here! I truly think you should publish this! You have done an excellent job! I'd like to comment on something that the person above wrote about the father of a newly diagnosed child having Tourette Syndrome. My father had TS+ the whole spectrum. In his day, no doctor could diagnose this brilliant man. He became an alcoholic - in my opinion, he "self-medicated". People MUST LEARN to have compassion - to read beyond the black and white of why families are the way they are. If someone had helped my Dad - he would not have died an alcoholic alone. (He had a very successful twin brother - no TS). TS has taught me patience and compassion. Thank you BB2, love Addy (Canadian friend of BB!)
Addy <a_addeline@hotmail.com>
Vancouver, Canada - Saturday, February 12, 2000 at 07:52:28 (PST)
I'm researching this info for my wifes sister who's 9 year old son has been diaog. w/ with tourette syndrome. The kid is very very very smart in school and should be in an excelerated program. The doctor who Diog. him suggests medications and my sister-in-law doesn't know what to do. Unfortunately his father is an alcoholic and It is my opinion that this is most of if not all of the problem. I will give her this information and hope for the best but I've learned to stay out of their business unless they ask my opinion. I have 3 children of my our thank God they are all well. Thanks for the info. JN
john novak <aahmes57@hotmail.com>
taylor, pa USA - Friday, February 11, 2000 at 11:42:42 (PST)
I am a single mother and i have just found that my 6year old boy may verywell have Tourettes syndrome. I'm still trying to find out as much as i can about this disorder. I must admit that I am a little scared for my son. I worry that the symtems will get severe and how do i handle all the problems to come?
Tina Chase <tchase@movebisson.com>
Topsham, ME USA - Wednesday, February 09, 2000 at 10:24:52 (PST)
Really appreciate this home page. My dtr is age 12, diagnosed last Thurs. with TS and Anxiety disorder. She began with the flu, then an asthma attack for which she was hospitalized and then several days at home, she began making a very distracting vocal tic sound. It sounds a little like a belabored hiccup. I took her to school and they wouldn't let her be in the classroom. They drilled her about doing this deliberately (of course, no one had made the diagnosis at that point.) My dtr is in the gifted program at school. She is extremely creative. Plays the flute, piano and has a beautiful voice (takes voice lessons) and appears in as many drama productions as she can. This is blowing her away in that it threatens her singing voice. However, she is handling being put in a special needs class (temporarily I hope). She just wants to explain to classmates what she has discovered about this illness and go on with her life. We are hoping meds will help so she can go back to class, but so far, she has only had one day (a Sat.) that was nearly tic free. We realize now that she does have other more discreet tics that we just didn't catch earlier. Her father is bi-polar. We are older parents. I had her when I was 4l. I was infertile for 20 years. This child is a blessing, no matter what happens with her. We are proud of her coping with this. She has a wonderful future.
Dawn <rich@aone.com>
Longview, WA USA - Monday, February 07, 2000 at 22:44:09 (PST)
Thanks for the great web site. I have two boys with TS. OCD runs 'rampant' in our family. It has been a process for me to come to understanding the 'positives' that come to me and my boys as a result of their TS.
Beth Kaler <bekaler@ties.k12.mn.us>
Apple Valley, MN USA - Friday, February 04, 2000 at 11:10:15 (PST)
My daughter was diagnosed with tourette in october of 1998. i'm still learning about tourette. i have a lot of questions about behaivor, rage, frustration and pretty much everything that goes with this syndrome. i'm very confused about this becasue most of her out bursts are at me. i need help on how to help her. she going to be seven soon and i need to know how to help this child and help myself,
Dawn <dawnrdbjt@aol.com>
pa USA - Wednesday, February 02, 2000 at 21:09:05 (PST)
Your site is excellent and a very positive inspiration to parents with TS children. My son has TS+ with ODD and OCD comorbid behavior. His rage is the worst part of the package. Our decisions relating to medication are solely based on his rage and physical attacks on my wife and me. He is 7 years old, weighs 80 pounds and is very physically dangerous to us when he is raging. He is currently on seroquel, tenex and luvox. We had him on risperdal for six months last year which helped his behavior and masked his tics, but he gained 20 pounds. We took him off the risperdal in Sept. 1999 and his tics returned with a vengeance and his behavior changed for the worse. His rage is vented only at me and my wife. We are working with a cognitive behavior therapist as well as with his psychiatrist, but feel we cannot work on his behavior long term until his medication chemistry is stabilized. His behavior at school is reportedly very good and he has no apparent learning disabilities yet. For us medication is not an alternative, it is a must. The side effects of the neuroleptics are no doubt the scariest thing any parent can imagine. But facing an 80 pound child with teeth bared, fists flying and ready to kill, who will soon be a lot larger, is even more frightening. Yes, we practice Ross Greene's techniques, but when his rage comes out of nowhere at the mildest question, then there is no time to backoff, but we just have to play out his meltdown. Medication for our son has to be the answer to stabilize him. You should field more questions and answers from parents whose children are on medication and what's working and not working and why. Thanks, Gordon
Gordon Watkins <grwatkins@aol.com>
Los Angeles, CA USA - Wednesday, February 02, 2000 at 13:03:24 (PST)
My son is 9 yrs. old with several tics. Has anyone's chid gone through a critical incident before diagnosis? E-Mail any time. I will get back to you when I can. P.S. SMILE - WE ARE HERE TO SUPPORT ONE ANOTHER!Thank You
Mimi Macko <MCMAKO325@AOL.COM>
lAUREL SPRINGS, NJ USA - Monday, January 31, 2000 at 09:09:32 (PST)
Hello, I am so grateful for your site. My almost-8-year-old son was diagnosed with TS a few days ago and I have spent all my waking hours on Internet doing research. By the time I found your site, I was absolutely terrified. I thank you very much for the site. It made me feel more positive. It helped me understand that we may be able to deal with this in a productive manner. My son has lots of motor and vocal tics. I don't like the pediatric neurologist that diagnosed him (he told me that my son had a nervous tic disorder and sent a letter to the pediatrician about TS syndrome; if I had not talked to pediatrician about something else, I would have never found out) and am trying to find a good doctor. It is almost impossible to get to the UCSF Tourette Clinic, we are on the waiting list. Any suggestions would be appreciated. Again, thank you for the goodness in your site.
Julia Bushkov <jbushkov@astreet.com>
Hillsborough, CA USA - Sunday, January 30, 2000 at 11:14:54 (PST)
You seem to know alot about this condition would you know if Asperger Syndrome is connected to Torrettes Thankyou
Victoria Williams <Tori43@webtv.net>
Philadelphia, PUS USA - Tuesday, January 25, 2000 at 18:52:17 (PST)
Blessed ... I FINALLY visited your website, and am so glad I did!
Susan, AKA PianoLady229 <jacksue@alum.mit.edu>
NJ USA - Tuesday, January 25, 2000 at 18:28:15 (PST)
I just discoverd this website, I need help in understanding what to expect out of my 12 yr old son at school in his classroom behavior, schoolwork, and about teaching him how to stay on task better. He has TS/ADHD. It seems everyone I know misunderstands what he should or should not be doing, it seems as though Me-his mother is the only one. Every one else seems to expect him to act normal and that he doesn't have any TS/ADHD problems. Any one out there that can relate to me?
shirley couvillon <one2bank@aol.com>
new ellenton, sc USA - Monday, January 24, 2000 at 04:52:42 (PST)
Hola BB,te felicito por esta hermosa y magnifica pagina,yo tambien soy un afectado por el TS y desearia ponerme en contacto con otras personas relacionadas con el TS, del mundo de habla hispana.Pertenezco a la Asociacion Española para el Sindrome de Tourette,por ese motivo deseo comunicacion. I wish to contact with other persons with TS ,please send email to.Thank you. Muchas gracias por todo BB es esta, una muy buena acción.Hasta pronto.
Emilio <emilira@menta.net>
Barcelona, Spain - Sunday, January 23, 2000 at 06:39:46 (PST)
Holla BB, eres un Angel, gracias por tu website. Soy Maria in Madrid do you remember?? I have ticced as long as Ican remember, I never heard about TS until now, I am 53. I do not feel alone, I do not feel like a big 0 anymore. Muchas gracias espero charlar contigo pronto, el chat MGH no funciona desde algun tiempo. I miss you and all the friends from the chat. Un beso. Maria facasals@mundicom.com
Maria de Fátima Casals <facasals@mundicom.com>
Madrid, España - Sunday, January 23, 2000 at 04:54:32 (PST)
I love your web site, my son has been diagnosed with TS for the past 6 years and with meds his tics have subsidedquite a bit, he also has OCD and ADHD. He has a tough time making friends. I'd love to hear from other parents of middle school kids to hear how they are living with TS.
Cheryl <Smorri2320@Aol.com>
mukilteo, WA USA - Friday, January 21, 2000 at 09:33:03 (PST)
Great Site! Always glad to get more information on TS. I have a ten year old daughter with TS, OCD, ODD, and ADD. I have a six year old son with ADHD. He is very similar to his sister and it makes me nervous that he to will develop TS.
Michelle McCready <pmmccready@email.com>
Mission Viejo, CA USA - Thursday, January 20, 2000 at 23:03:10 (PST)
Excellent presentation to the newcomers to this subject. You capture an attitude that is very wholesome and healing. My daughter with TS commented compassionately about a youngster in church that was struggling socially, "Gee, Mom, we're ALL broken SOMEhow!" Amen, little sister of mine! So let's be about loving each other! Thanks BB2!
c. muzal <muzal@mindspring.com>
Seneca, SC USA - Wednesday, January 19, 2000 at 13:23:09 (PST)
I have a 15 year old grandson with tourettes and now the DR. says my youngest grandchild has symptoms of it
Daniel L. Neu <ndesertdan@aol.com>
Canisteo, NY USA - Wednesday, January 12, 2000 at 06:51:07 (PST)
My husband and I have an 8 year-old son with TS. He has been diagnosed since 1998 (age 7). We are fortunate to have a very active and supportive TS Chapter. Our son also has hypoarousal and a dysfunction or lack of development of the amygdala. He can not appreciate consequences due to his pathology. This makes for an interesting approach to behavioral therapy. His pathology also makes for a catch-22 situation with regards to medication considerations. He does not currently take medications. We are intervening with classical conditioning. He is in second grade and the school team is excellent, especially his 2nd grade teacher and his Special Education Teacher. We have had some rocky roads with the school environment but we are learning together by trial and error what works for our son. The challenge is that what works today may not tomorrow. I will definitely visit this site often to learn what's new about TS.
Jennifer Dwyer <mwdjsd@netusa1.net>
Cicero, IN USA - Thursday, January 06, 2000 at 15:46:35 (PST)
I would like to thank you for taking time to write these letters. I have a son, Dustin, he is 10 years old and has been diagnosed with tourette syndrome.So far he,his Dad and I have been coping pretty well.It really helped him alot when his teachers explained to the other children about his tics,most of them stopped making little remarks about it. That was bothering him more than the tics were I think.
Eileen Smith <eileenover59@hotmail.com>
Clinton, Ar USA - Thursday, January 06, 2000 at 10:09:23 (PST)
I appreciate this website. I am a mother of four, three of which have learning disabilities, ADHD, and OCD. Also, my 16 year old has some facial grimicing and now the doctor is saying my 8 year old may have TS.
LK
IL USA - Wednesday, January 05, 2000 at 00:28:47 (PST)
THANK YOU SO MUCH FOR SUCH GREAT INFORMATION. MY SON WHO IS 17 HAS TS. WE ARE STILL IN DIFFICULT STAGE OF DEALING WITH THIS. YOR SITE HAS REALLY HELPED ME IN UNDERSTANDING TS. THANKS
TAMMY SINGLETON <SINGLETA@AOL.COM>
MACON, GA USA - Tuesday, January 04, 2000 at 21:45:57 (PST)
Excellent site and well done. I will definately bookmark this page and pass on to my Other Ts friends in Canada. Best Regards Moma Touresa :)
Moma T:) <tmderosa@globalserve.net >
Ontario , Canada - Monday, January 03, 2000 at 05:55:39 (PST)
I'm new on the web. We are indeed also blessed by two. I, myself have TS/OCD., and so does my daughter Samantha, age 8. I wanted to tell you that you have a wonderful site and that I enjoyed reading the other entries. (several times, ha,ha) Please reply if possible. Thanks. and God Bless your family.
Shree <Justopnb@AOL.com>
Remlap, Al USA - Saturday, January 01, 2000 at 20:39:13 (PST)
thank you ANGEL of this new seemingly (until i read your web-site), terrifying diagnosis.
ROBYN KEOUGH <robynkeough@aol.com>
Brentwood, mo USA - Tuesday, December 28, 1999 at 21:25:20 (PST)
Thank you! your site has been a great help. I'm still a little puzzled but I think I'll catch on at some point. A friend of mine has been diagnosed with TS and I wasn't really sure what it was. He seems absolutely fine so I was eager and very curious as to 'what' it actually was.
Charity <cuppy_07@hotmail.com>
Seoul KR - Sunday, December 26, 1999 at 03:52:40 (PST)
My son is not diagnosed, but has a variety of tics, anxieties and educational difficulties. I did not know where to turn - but now I have found you I no longer feel so isolated. Thank you for your generosity and understanding.
Kay Stead
uk - Tuesday, December 21, 1999 at 01:37:05 (PST)
Thanks for your info on diving! I didn't know where to look for info and once again the MGH site came through. I love your site and wish I'd had it 5 years ago. DK
D. Kroner <isle_hawg@netpci.com>
Santa Rita, Gu USA - Sunday, December 19, 1999 at 03:14:46 (PST)
Great site. It feels pretty isolated where I am. I know my 11 year son has TS, but it's a very lonely walk right now. The rest of my family don't think there's a problem, and my doctor thinks I'm making a deal about nothing. It's just so good to know there's support out there.
Cas <biggrin@bigfoot.com>
Guernsey, UK - Saturday, December 18, 1999 at 03:32:42 (PST)
I work with a boy who was diagnosed with TS. He is now in 5th grade and is doing well for all the difficulties he faces minute by minute. I am a speech and language therapist and my biggest job in this area is educating the regular education teachers on this. It isn't easy but I am stubborn so I keep on pushing. There was an incident today and thanks to others who understand. I want to do what is best and I feel I do. Sometimes, being the between person understanding the teacher, the parent and the child, and myself is "bigger than me." I am signing in to let you know I am here for you, trying my best. I say a prayer before I talk to the child, the parent or the teacher because I am not sure of my own answers either! Other special education teachers are a big help to me. My job is to get the parent and the teacher to keep communicating. What a job! The young child is a wonderful addition to my caseload! marezebra@aol.com
Mary S. <marezebra@aol.com>
Janesville, WI USA - Wednesday, December 15, 1999 at 12:25:59 (PST)
yeah..... well i liked the pages you have on aol about tourette syndrome and just thought i would tell you my thoughts and comments thank you please respond sincerely ashley
ashley westwood <ash15love@hotmail.com>
auburn, wa USA - Friday, December 10, 1999 at 18:38:55 (PST)
Hi! Thanks for the reassuring site. I sought out a diagnosis in order to get respite from our county. Previously, my son was diagnosed with ADHD and ODD. I was thinking Asperger's (I still do) and the doctor said "Tourettes." It was a surprise as I have done alot of research. He immediately prescribed Tenex even though I did not ask for medication or discuss much regarding my son's behaviors. Thank you for reassuring me that medication may not be the key to my son's adjustment. We have found altering the school environment by home schooling to be the most helpful in our son's case. Why must all children learn in a herd? Thanks for the perspective.
Debra Kleppinger
USA - Monday, December 06, 1999 at 09:04:20 (PST)
Thanks for the info. Its very useful. My son is 6 and has ts and mild ocd. The tics are not a problem his behavior is. He is impulsive, aggressive, sensitive, crys easily, defiant to request, touchs other people, and sometimes hits people. Would like to hear from others who have behavior problems with their children and what helped them or might help me. Thanks for the information.
Angelique Cartier <rmillar@prodigy.net>
Jax, AR USA - Saturday, December 04, 1999 at 14:54:22 (PST)
My son is 10 and was diagnosed in February 99. He is very bright and full of life. I have to say when I noticed his tic I freaked. We went to neurologist and he was put on clonidine. It works somtimes. Since the tic is in his neck his neck hurts when the tic is active. The clonidine was making him sleep all the time so the doctor prescribed risperdal. After reading about it I was once again freaked. I did not want to do anything to alter who he is his personality. I had to taper him off the clonidine and when I started this process his tic slowed way down. I did not have to start the risperdol. Now his tic is bothering him and he is getting frustrated. If you have any information about experiences with the medications that would help me make that decision I would be very grateful. I have been searching the internet for information for quite some time but I am not internet savy. Any info, chat group, advise would be greatly appreciated. Thank God I am not alone. I pray every night that I will have your "So What" attitude and sometimes I think I am there. Thanks again. Glenda
Glenda Atkinson <ggfatkins@aol.com>
Navarre, FL USA - Monday, November 29, 1999 at 14:48:20 (PST)
I don't know how to thank you for your web site. We are to visit a specialist in two days for a diagnosis on my 6 year old daughter. As her father has Tourette syndrome, I am pretty familiar with the symptoms, and know in my heart of hearts that she has it. Her father has a severe form of the syndrome, we are now divorced due to his violent behaviour (who knows whether that has anything to do with the illness). I was terrified about going for a diagnosis, but having read your pages I feel much more positive about it- after all, a dagnosis on Monday won't make her any different from the wonderful child she is today. As she says, she doesn't mind having her funny 'things' (tics), they make her different and special. Thank you once again for giving me optimism for the future. Cheryl
cheryl thompson <cherylt@eggconnect.net>
cambridge, england - Saturday, November 27, 1999 at 14:25:26 (PST)
MY 18 YEAR OLD HAS TS. I AM AN RN AND WHILE READING UP ON IT I BECAME TERRIFIED. I HAVE ALREADY LOST ONE SON TO MENINGITIS AND WORRY OVER MY OTHER KIDS. AFTER READING THE LETTERS FROM OTHER PARENTS I FEEL BETTER ABOUT THINGS. I HAVE REALIZED WE ARE NOT ALONE OUT THERE.I APPRECIATE YOUR WEB SITE. I KNOW THAT GOD HAS CONTROL AND MY SON IS IN HIS HANDS BUT IT IS NICE TO KNOW THERE ARE OTHERS I CAN TALK ABOUT THIS WITH . THANKS.
MARIE <BEN92990>
HONEA PATH, SC USA - Thursday, November 25, 1999 at 09:16:43 (PST)
GREAT INFO! MY 9YR. SON WAS JUST DIAGNOSED WITH TS.I'LL BE BACK AND WILL SHARE THIS SITE WITH OTHERS.
KAREN LEAVITT <KLEAVITT328@AOL.COM>
LAKELAND, FL. USA - Monday, November 22, 1999 at 18:16:57 (PST)
I have an 8 year old daughter also who was diagnosed a year ago with TS. BB2 has been a wonderful support source and a ray of sunshine. Keep up the good work :) and thanks :o)
Patti <SandPNJ2@aol.com>
Stanhope, NJ USA - Monday, November 22, 1999 at 14:36:52 (PST)
Thank uou so much, My 8 yr. old grandson has has trouble with pennmanship for 3 years. The eye tics started in Sept, now the shoulders, I am raising him. The pediatricitian said Tourette today. I'm glad I found your site. Like your son, he is so well behaved and such a bright lovable child, tics we can live with, I think I will forget the recommendation for Catapres. Just need to talk to his school, he has very military like-very opiniated, unbendable teacher. Thanks again, will definately keep in touch. Also would like to find specialist in Orange county Calif. Any clues? And I too would like chat room address. Thanks again.
M. Barber L.P.N. <jcbmfb@aol.com>
La Habra, Ca. USA - Saturday, November 20, 1999 at 00:14:25 (PST)
Thanks for the uplifting site. I have three sons 5,3,and 2. The oldest has TS/OCD,the middle has TS, and the baby has 2 tics. I am an RN and appreciate the user friendly info. It is often hard for me to explain things to people in "non-nurse" lingo. Thanks.
Paula Diane <Dbfulmer@aol.com>
LA USA - Friday, November 19, 1999 at 23:56:31 (PST)
We have suspected our 6 year old son has TS for over a year now. This was my first look at the information available on the internet and I'm glad I came here first. Your website felt like open arms stretched out to welcome me. But I am still having trouble moving on to the "so What" phase and am trying to ignore the obvious. Next time I'll check out the resources suggested and try move on.
Laurie
USA - Thursday, November 18, 1999 at 11:17:12 (PST)
Thank you for sharing your website with me. I haven't had a chance to read it in it's entirety but from what I read so far I am quite impressed by your candor and your uplifting spirit. I also have a child who has TS/ ADHD and possible BiPolar. He is now 16yrs. old. Presently we are on the medicine decline mode. He's tried about everything there is and was on 4 different meds up until two months ago. He now takes Risperidone and Ritalin to balance the TS and ADHD. He is in a waning time right now so it looks as if the meds are stabilizing the tics for him. I personally don't believe it has anything to do with the meds. This disorder has a brain of it's own and will wax and wane as it needs to and at times it will increase with stress or changes to routine. My son wasn't diagnosed with TS until he was 12 yrs. old and to this day very few people believe he has it because they don't see him acting like the "kids on the Maury Pouvich show." My sons tics were mostly vocal like barking noises, blowing, chirping, screeching, repetative, mocking, etc. The doctors then diagnosed him with ADHD at 8 yrs. He was very active and couldn't stay focused for more than a minute. When he hit 12 yrs. old he started with shoulder rolling, continuously flexing feet, cracking knuckles, jaw movements, facial grimaces, twirling, skin picking, etc. The tics got to be less noisy as he entered High School with the exception of echolalia (repetativeness). The tics may not always be seen by the casual observer but nonetheless they are tiresome and distracting for him. I have two more children, the youngest is my daughter who is showing signs of OCD. She washes her hands so frequently (to get the germs off) that we've had to put an antibiotic on them and wrap them with gauze before she went to bed so they wouldn't be so red and irritated the next day. This comes in phases so we haven't sought treatment and I'm not so sure I will unless it becomes bothersome to her. I've learned this from the rollercoaster ride our family has had the priviledge of enjoying these past 16 years. I, like you, like to see beyond the disorder and emphasize, encourage, and support each of my children's individual strengths and positive qualities. One thing we all have to remember is that TS does not define a child, how you react and treat each situation is what defines TS. Thank you again for this wonderful, and easy to read website. I'll be sure to share it with the many people I continue to educate about TS and it's symptoms. I also wanted to mention another good book that I have found to be very informative, more so now that my son is a teenager. My son has said that it's better than the "What is Tourette Syndrome" type of books. It's called, "The Unwelcome Companion" by Rick Fowler, he has TS. An excert from the beginning of the book sums it up: When I breathe, it breathes. When I speak, it speaks. When I try to sleep, it won't let me. Whatever I attempt to do, it's there...waiting to spoil the moment. To a doctor, it's a disorder, a medical oddity. To an onlooker, it's a spectacle-perhaps humorous, perhaps grotesque. To me, it's a monster, a demon, a hellish beast who has no right to exist in my world or anyone else's--it's my unwelcomed companion.- by Rick Fowler
Liz Gerhard <Lizkids@aol.com>
CT USA - Wednesday, November 17, 1999 at 13:02:53 (PST)
You site is an outstanding resource. We are adding it to our webpage of resources. Keep up the good work
Dr. Alan G. Nemerofsky, Ed.D <ANemerofsky@CCBC.CC.MD.US>
Baltimore, MD USA - Tuesday, November 16, 1999 at 22:56:27 (PST)
I don't know how you got my address but I am so glad you did.Thanks for the web site.My son has TS and we have known for about 2 yrs.We deal with it on a day to day bases.He also has OCD's and ADD.My Daughter is showing signs of this as well.Thanks again!!!!!!!!!!
Michelle <MWales8662@AOL.COM>
Jackson, LA. USA - Tuesday, November 16, 1999 at 20:19:50 (PST)
My daughter is 31 and believes she has TS but has not been diagnoised. She also has panic attacks. She and I have discussed this and she wants my help. Can you help us find a doctor in Southern California, Arizona, or Las Vegas? Any suggestions or iinformation you can provide would very appreciated.
Mary <probaron@aol.com>
Palm Desert, CA USA - Thursday, November 11, 1999 at 11:04:43 (PST)
Thanks. My 8 y.o. was diagnosed today. In kindergarten he hugged, by first grade it was interpreted as "hitting". Now in third grade, new school, new city, re-evaluated with a knowledgeable psychiatrist as an impulse control issue, ala T.S. Thanks for your insight!
Lynn Kiehne <lynnspsmg@aol.com>
Tampa, FL USA - Tuesday, November 09, 1999 at 16:42:21 (PST)
Thank you sooooo much for creating this website!! I am a mother of a 3 1/2 year old son who has just been diagnosed with TS. I was terrified about what was to come and now that I have read through your site I am much more comfortable and shall I say not as paranoid as I was about an hour ago. I have been reading a lot about TS and everything I have read has said how terrible TS is and how bad it can get. My son has the constant eye blinking, the grunting, the shoulder shrugging, and he is constantly opening and closing his mouth as though he is trying to pop his ears or something. I really don't want to have to put him on any medication and I would really like to know how to go about finding another method of treatment. I am not sure how to start my search for the root of the tics. I would like to try to find out why he is having them and try to eleviate the situation if I can. Do you have any suggestions?? I would really appreciate any input you could give me. Thanks again for all of the helpful and insiteful information in your website. ~ Mari Giuliani
Mari Giuliani <mari_giuliani@yahoo.com>
San Jose, CA USA - Monday, November 08, 1999 at 20:00:56 (PST)
I am a 24 year old with T.S. & O.C.D., I was diagnosed with T.S. when I was 10 & later diagnosed with O.C.D. at 21. I have been on every medication imaginable & finally found a new one Luvox that has worked miracles. I have been trying to get information on T.S. for my fiance & your website has been very informative. I just wanted to say thank you.
Michelle McGuire <shelley@cnpjax.com>
USA - Monday, November 08, 1999 at 10:27:37 (PST)
Blessed- Remember me? I'm Eloise. My hard drive died and I forgot to save all my things. I don't have the address for the chat group. Can you please e-mail it to me? I miss talking. Love your website - you're amazing! I haven't checked it all out yet - am e-mailing you first. Thanks, Eloise
Eloise Hiltzik <Elowiz>
Locust Valley, NY USA - Saturday, November 06, 1999 at 16:38:06 (PST)
Thanks for the positive site!!
Pam Levin <nivelldes@aol.com>
Boothwyn, PA USA - Friday, November 05, 1999 at 22:12:00 (PST)
It's so wonderful to hear positive comments. I have always focused on the wonderful person my 9 year old son is. When I first started researching TS, I talked to many parents who gave me stories of medications and hospitalizations. I was terrified. I knew I would do whatever it took to help my child. At this time he is out of school due to a lack of understanding and communication on the school's part;however, there are many wonderful people at our local school who have helped. I do follow the Feingold diet and feel it helps him. The best thing for him is the "so what" attitude. He is such a great kid. I only wish we could hook up with other kids who have TS. Thank you for your positive comments. Aren't children amazing?
Jamie <mkrebs6337@aol.com>
IN USA - Friday, November 05, 1999 at 17:34:04 (PST)
As an educator I was doing research to help a student I think may have TS. I was happily surprised to find such a positive and supportive site. Thank you for your work and may God continue to bless you and yours!
JOR
USA - Friday, November 05, 1999 at 15:15:06 (PST)
I am so glad that I found this website. Every thing that I had read until now was so gloomy, with this being such a "dreaded disease" that I had stopped reading about it. Our son had a fairly mild case, and I didn't want to read about the more severe cases, since it caused me more anxiety. He has been on Catapres & Ritalin for about 3 months now, and the symptoms had become very mild, until this past weekend. Reading this web page reminds me that this too will subside, and hopefully the symptoms will again be very infrequent.
Ben <bshind3384@aol.com>
Los Angeles, Ca USA - Wednesday, November 03, 1999 at 15:40:29 (PST)
I cannot tell you how relieved and how much better I feel after reading your webpage. My beautiful 6 year old son is, I feel anyway, suffering from TS. His slight tics go from sniffing, to clearing his throat, to his latest as of today, gasping. His father and I saw his pediatrician last year to inquire as to the possibility of TS and were basically told "it could be. It could also be a mild tic disorder, that unless the symptoms were drastic an actual diagnosis of TS was probably not possible." Is this true? I can't seem to find that information. Is it critical to know which you are dealing with? The tics come and go, one replacing another every few weeks or so. We have basically ignored them, seeing behind them the very bright and creative little boy who seems to not be bothered by them. I have a bit of concern about some recent "angry episodes" he has displayed, but I would not interpret them as rage per se. In your experience is it important to seek some treatment or therapy to help him (as well as us) better understand what is happening? I have concern that his fathers and my separation/divorce when he was 4 may have been some sort of catalyst for the onset of these tics; and worry that he may need some additional assistance (professional) in dealing with his feelings over this occurence. Help! I realy feel that we handling it well in that we look at this as just another part of what has made up a remarkable little boy, but don't want to overlook any treatment areas that we possibly should be exploring. Thank you again for sharing your very positive and remarkable life with 2 such obviously remarkable children of your own. Our children truly are our blessings in this life and you have shared your blessings with other concerned family memnbers so very eloquently.
Lisa Wigen <lisawL@aol.com>
Spokane, WA USA - Tuesday, November 02, 1999 at 22:13:37 (PST)
Finally took time out of the room to check it out and glad I did Great site BB2!!!!!!!!!!
TS Mom <laceyp@cybertours.com>
Kennebunk, ME USA - Tuesday, November 02, 1999 at 14:30:05 (PST)
My father who is 45, was just recently diagnosed with TS and it scared me a lot. I am a first year nursing student and when he told me he was diagnosed with TS, I just about freaked. I am so thankfull to your page for helping me to understand what I can for my father. Once again, THANKS!
Jessica Petty <GRUMPY3DOPEY@aol.com>
Mexico, NY USA - Sunday, October 31, 1999 at 08:34:33 (PST)
This webpage is great. I have been researching TS and am very pleased with your page. I think I have it and you have given me alot of encouragement. I will look into this doctor stuff and make sure I go to the right one. God Bless!!
flower
USA - Friday, October 29, 1999 at 21:42:19 (PDT)
THANK YOU FOR YOUR WEB PAGE. IT WAS VERY INFORMATIVE. I AM 51 YEARS OLD AND JUST HAD THE NERVE TO GET A FORMAL DIAGNOSIS OF T.S. THOUGH I HAD BEEN SELF DIAGNOSED FOR YEARS. I WOULD LIKE TO READ MORE ABOUT ADULTS WITH T.S. SINCE THAT IS WHERE MY INTEREST LIES. IF YOU KNOW OF ANY SITES OR BOOKS THAT I MAY BENEFIT FROM PLEASE LET ME KNOW. I AM MARRIED WITH THREE SONS. I AM A REGISTERED NURSE. I HAVE ALWAYS HAD ALOT OF FRIENDS. I AM VERY SUCCESSFUL AND T.S. HAS NEVER HAMPERED MY LIFE. NO ONE CARES OR IS CONCERNED ABOUT IT BUT ME. IT IS FAR WORSE FOR ME THAN ANYONE AROUND ME. IN FACT MOST PEOPLE AROUND ME DON'T EVEN NOTICE IT ANYMORE. ITS JUST PART OF ME. BUT OF COURSE I HATE IT! THANKS AGAIN, LIZ
ELIZABETH CLOS <CCLOS48@AOL.COM>
PLYMOUTH, MI USA - Friday, October 29, 1999 at 05:48:39 (PDT)
I hope this will help. We are going to our second Neurologist in Nov. I am trying alternatives treatments until then,,,diet, cranial sacral etc... My son is ten and daily his tics get worse. Please help!
Gwyn Strassle
USA - Thursday, October 28, 1999 at 21:27:38 (PDT)
Very well put together page. Glad to know that it's out there.
JoDee <jodee_sandberg@hotmail.com>
OR USA - Tuesday, September 28, 1999 at 23:14:45 (PDT)
I love your site, and I love your attitude! This summer I figured out on my own that my 10 yr. old haas Tourrette's. For me it was a big relief. I had thought for years that we had an escalating behavioral problem. Now that I know what it is, the pressure is off for both of us. So he tics. Big deal. This is the same attitude I take with my own Essential Tremor. So I shake. So what? I can't help but wonder if there is a connection between the two.
Blueskye <blueskyek@hotmail.com>
Hot Springs, AR USA - Tuesday, September 21, 1999 at 18:42:55 (PDT)
I just bookmarked this fabulous site. My son is newly diagnosed with TS and ADHD, so I'm trying to get all of the information that I can. Any feedback will be much appreciated.
Jennifer Blackburn <Jeniccurn@aol.com>
Lexington, KY USA - Friday, September 17, 1999 at 02:48:40 (PDT)
Discovered your site a couple of weeks ago, wish I had seen it 18 months ago when my son (now 9) was diagnosed. After trying Clonidine, nutritionalist, etc, have pretty much gone to your "so what" attitude. Am much more concerned w/ his specific l. disab. in reading. Also have a 7 yr old son who is showing TS signs... Thank you for all the time and effort you have given for this site!!
Cindy J <Cynthjones@aol.com>
Cumming, GA USA - Tuesday, September 14, 1999 at 09:54:45 (PDT)
Your website is great. You put a lot of hard work and wonderful experiences in it. My son is 15 and was diagnosed with TS last week. In my efforts to research this I came across your site, and it has given me a lift. Thank you for your positive attitude. I'll be visiting your website again soon. Thanks-Judi
Judi Manning <PrtyFlavrs@aol.com>
Arlington Heights, IL USA - Tuesday, September 07, 1999 at 05:41:43 (PDT)
Blessed this is a wonderful site!! all I can say is - WOW. I enjoyed every bit of it, and only wish I could have had access to it 13 years ago when sean was first diagnosed. this is a goldmine full if information - thanks for being there for everyone!!! deb
Debbie <dlynch32@aol.com>
Levittown, NY USA - Saturday, September 04, 1999 at 14:59:21 (PDT)
Thank you. I received your e-mail and went directly to your site. I am torn between meds or no meds. My 10yr.old son takes Clonidine and does not like it. There are days when he is zoned out, not there,not himself. When he is at home we can manage his behavior but what do we do at school. His grades did improve quit a bit since he has been on the med. This is my greatest concern. I want him to like school not hate it. He struggles so hard and there are nights I go to bed crying because I do not know what to do. But this is not about me its about Carl. I am now questioning whether or not he has ADHD or bipolar disorder. If I did not read your site I would never of known that information so thank you for taking time to create this wonderful site.
Lisa <muddyinpa@aol.com>
Alburtis, pa USA - Friday, September 03, 1999 at 17:46:14 (PDT)
BB ~ This is wonderful! Although we have been dealing with TS + for over 11 yrs. now I love to get any and all info. I can. Keep up all of the good work!
LOREAL <tomnloreal@aol.com>
CA USA - Friday, September 03, 1999 at 11:22:27 (PDT)
I have an 8-yr-old son w/ TS and ADHD. I visit the TS chatroom frequently. It helps me to know that I have somebody to talk to. I have OCD and did have ticcs as a child. I never imagined one of my children would have to go through this too. I am so glad there is more help and understanding about these conditions then when I was a child. My family just ignored my "strangness" and never thought any thing was really wrong with me. I want my son to know he is not alone and that he can be just like everybody else. I think there needs to be more community education about Tourette's. I have talked to many people who think that TS and OCD are just mental disorders that can be "fixed" with psycotherapy. I really apprecitate this site and will direct more people to it.
Lisa Jones("maddy") <lej89@webtv.net>
Independence, MO USA - Thursday, September 02, 1999 at 21:28:16 (PDT)
It's great knowing a site of this caliber exist for a condition society is so ignorant by. I to was not aware of this; being one of ignorance. Extending my hand out to you BB2....thank you >> Cheryl/Sammy, Son,15 with TS,OCD,ADD. Son 13, no signs, merely family but knowing makes a big difference in our lives, being stronger and every day is a well worth challenge noting never feeling this challenge only defeat. Bless you
Cheryl Q <JustATypN@aol.com>
Port St Lucie, Fl USA - Monday, August 30, 1999 at 18:43:21 (PDT)
Hey Kiddo! Absolutely FABULOUS job! So nice to see ouuuuuur kids finally addressed! Now...about that snide little comment on the "Personal Stories" page...;-)
Pam <Pamzee1@aol.com>
USA - Monday, August 30, 1999 at 03:15:16 (PDT)
BB2, I have watched your struggle and growth very closely - quite personally as you know. Often, I agonized for you and hoped our friendship and trust would assist you to rise above that awful "reeling" we both experienced at different times. And in sharing with you my family's experiences with TS, I discovered that I grew stronger and found greater insights I had never articlulated. Through trust and friendship, I think we both found a clarity and a renewed perspective. Your web site brings this same possibility to endless numbers of people. It is a wonderful culmination of all the experiences, personal growth, and reconciled angst many of us parents have traversed - not to mention the awesome job you have done translating the literature into "user friendly" terms. I applaud your wonderful success on this invaluable site and, most importantly, on the home front. TSA can surely reach its goal of making TS "irrelevant" with you on our side. I am very proud to count you as a friend.
MGS
USA - Saturday, August 28, 1999 at 08:08:57 (PDT)
Very nice work. It all flows together so smoothly in print. I wish my own family's experience with TS worked the same way.
Trudy <RUZAL@aol.com>
Oxford, NJ USA - Friday, August 27, 1999 at 19:18:44 (PDT)
Although my son was diagnosed 7-8 months ago I'm still at the stage where I want all the info I can get, especially with school starting. I thank you for this site. I started getting very depressed because he started with very exagerrated body tics and I don't want him teased in school (3rd grade) but I know this is just another thing to be accepted and it's a comfort to know there are others facing these same fears.
sandy <shm105@aol.com>
levittown, NY USA - Friday, August 27, 1999 at 12:15:23 (PDT)
BB, you are one of the kindest, most caring people. thanks for the support you have given to all of us. Awesome web page. Hugs, love, and blessings, Mary (^_^)
Mary (^_^) <TNCLAN@aol.com>
WI USA - Thursday, August 26, 1999 at 06:18:29 (PDT)
This site is great. I wish it was the only one I had when I started on this journey 2 years ago. The MGH forum merely terrified me into total panic. I suspect my ped/neuro reads this site because, at the end of our visit he said, "yes she has it, so what." I didn't appreciate it at the time but now, after reading your site, I do. I plan to change my whole focus right this second and start enjoying my 9 year old smart, pretty, atheletic daughter for what she is, a kid who blinks a lot. I loved your comment that kids make fun of kids who are fat or have big noses too. Her best friends include a dwarf, twins who have lost all of their hair, a boy with no language and so on. Her "perfect" friend suffers from depression. So there you go. She blinks. I feel like I am on a mission now and am grateful from the bottom of my heart.
Carrie
USA - Wednesday, August 25, 1999 at 08:47:35 (PDT)
What a wonderful website - So much credibility can be given to you as a parent who's really been there, done that! Thanks!
Paula <Inastbear@aol.com>
MI USA - Sunday, August 22, 1999 at 13:46:33 (PDT)
What a wonderful site! I wish I had found it when our son was diagnosed with TS 5 yrs ago. Very informative, balanced and candid. I remember crying for a week, mourning the son I THOUGHT we had lost.....no true. We have gone from Now what to So what.....this site will help the newly diagnosed do the same. Thanks for all your hard work BB2!
Maggie
USA - Sunday, August 22, 1999 at 12:35:41 (PDT)
Great site BB :) Keep it updated and growing...............Bob
Bob Geller <bgeller@brainiac.com>
Narragansett, RI USA - Saturday, August 21, 1999 at 12:06:22 (PDT)
Great site! Just what I needed to read- my nine year old was just diagnosed two weeks ago. In your book reviews I was all set to order the Tourette Syndrome: Tics, Obsessions, Compulsions until I got into Amazon and discovered that it costs $95.00!!! You might want to mention that cost in your review. I'm going to see if I can find it in a library.
Mimi (different one!) 
USA - Friday, August 20, 1999 at 07:18:56 (PDT)
Thank you so much. My daughter fits into the mild catagory of TS and her symptoms were at their worst when we went to the neurologist and was diagnosed. She is doing great in school and in her life in general. I'm the one that worries too much and watches for every little tic. Your information and approach will help me in the future to relax and see the positive and stop worrying so much!
Mimi
USA - Thursday, August 19, 1999 at 05:57:36 (PDT)
Yee-haw! This website gets a rating of 2 purple cowboy boots, AND a bolo! Nice work, Beeb! Regards, Jo
Joanne Cohen, LCSW <jocohen@tiac.net>
Milford, MA USA - Tuesday, August 17, 1999 at 19:41:05 (PDT)
Hi BB... Even we haven't met - I'll been waiting for a long time for you to come up with a web-site like this. Smashing!!! I've been "following" your effort and spirit for a long time and know that the net is just perfect for you. Keep it up....(as allways) "See you...." Christian jr.
Christian Melbye jr. <junior@intertourette.com>
Oslo, Norway - Monday, August 16, 1999 at 13:25:18 (PDT)
Just stumbled on to your website. I think it is great. My son is seventeen and has TS+. His story is not so good. He has been discriminated against in this states school system. I recently found notes in his school record where the higher-ups and local attorney were using the mental health and DFS to remove him from our home. This way the school district did not have to meet his needs. We were forced to move but new school won't work with us either. At present I am trying to find people who want to see new law made. There has not been any case law using a child with TS. My son is now a drop-out with no future. This might not be interesting to any one here but I just felt like sharing with people who really know about TS+. I have become an advocate to children in the public school system, helping them get their "unique" needs met under IDEA. My son has the worst case of TS that any one has seen---so I'm told. I wonder how bad he would be if the right program would have been designed forhim at an early age.
marilyn McGee <mare@crazedanddazed.com>
Raytown, MO USA - Sunday, August 15, 1999 at 13:06:38 (PDT)
I am one of those parents with a newly diagnosed child. He is 8 and was diag. on 7-99. It is very difficult to obtain information geared for the overwhelmed parent. You have done a wonderful job! I always "try" to think positive and if the worst happens... I'll deal with that when it comes. Your positive views are what parents need to hear in the beginning. Thanks for your wonderful contribution to the frightened, angry, confused parents that don't know where to turn.
Karen <Kewjjk5@aol.com>
USA - Thursday, August 12, 1999 at 16:29:38 (PDT)
HEY!! Many thanks for telling me about your site! Information such as you have provided can only assist those "in the dark" about TS. KUDOS!! By the way, if I can be of any assistance, please don't hesitate to call on me. Thanks Again!!
Garry Earles <garrye@javanet.com>
Greenfield, MA USA - Wednesday, August 11, 1999 at 08:00:05 (PDT)
Wow, looks terrific! Do you have spell check on this thing? Just checking! (Just a little nuance there!) Do I get to be next to Chuck and Jim? Or do I have to go to the end of the line? Well, you know what I think about word choice, and I'm so proud to see such an effort in relation to a condition that we have come to learn from, delight in, cry over, and embrace with our whole spirit! Now where did you say the coffee was? Marietta
Marietta <Mariettavb@aol.com>
MI USA - Monday, August 09, 1999 at 21:11:55 (PDT)
Beeb, Way to go! It is gratifying to see a new TS site on the web with a message of hope for *people* who happen to have Tourette Syndrome and the *people* who love them. A lot of "these kids" grow up to have happy and useful lives, good jobs and healthy relationships. Some of us not only "turned out OK in the end", but we were bright, cheerful, singing, joking, laughing, loving, generous, helpful and delightful to have around all along the way. We had a number of peculiar movements, sound effects and other "habits", but that was not what defined us. I really enjoyed reading about your two sons. They do you credit. Cheers!
Blue Tics <bluetics@att.net>
NJ USA - Monday, August 09, 1999 at 16:15:09 (PDT)
Dear BB2: Thank you for your kind words and the effort reflected in your web site. It is one that I will encourage parents to use and peruse.
Jim Leckman <james.leckman@yale.edu>
New Haven, CT USA - Monday, August 09, 1999 at 15:10:49 (PDT)
BB2, the TS community owes you big time. This is a very wonderful, uplifting and informative site. Thanks from my son and me.
Darla <DarlyDon@aol.com>
OK USA - Sunday, August 08, 1999 at 18:16:03 (PDT)
BB2! This is great. I too wish I could have had this resource when my daughter was dx. It took a long time for us to get to the 'so what' stage and I've often felt out of place at our support group, on the message boards etc. because of our lack of problems with our daughter's TS. Thanks!!!!
Kathy <kkelly16@aol.com>
USA - Saturday, August 07, 1999 at 08:45:11 (PDT)
I am a 28 yr old mother of 3 that has had a series of situations arise with my middle child who is 6. He has been diagnosed with A.D.H.D and physically or otherwise health impaired(POHI). He has a severe virus that caused him to develop warts all over his hands. When they couldn't get any worse he would sit for an hour and pick and pick. The docter that was treating him had no reason to prescribe any medicaton because he had picked them off. Is there any wasy you could let me know if this is related to TS? I am desperate and I adore my son. Please let me know. By the way this page is the greatest. God bless you and keep up the good work:-)
Lisa DeHuelbes <wexford@aol.com>
Lansing, Mi. USA - Thursday, August 05, 1999 at 10:10:24 (PDT)
Congrats BB2!! You have always been there for so many, I look forward to passing this on to others! What a great service to all TSers everywhere, Thank You!!!!
Cathy <Amom22@aol.com>
USA - Wednesday, August 04, 1999 at 23:19:03 (PDT)
Looks to be a really good informative web site. I will go away and read it up properly! (From a coservative Britisher)
Brett Wolfindale <brett@wolfindales.freeserve.co.uk>
Yarm, UK - Tuesday, August 03, 1999 at 17:17:44 (PDT)
My 7y.o. grandson has trigger rapid soft coughing (like 20 per minute) notedover the past 2-3 months. Can this be just a tic or a manifestation of Tourette Syndrome? Your knowledge of the entity will help us
Ernie Weitz <Erniewe@aol.com>
San Francisco, Ca USA - Tuesday, August 03, 1999 at 16:23:55 (PDT)
BB2, Terrific job! (As always) You have filled this gap in the TS community nicely. Thanks, and looking forward to more. Barb
Barb <DrMom811@aol.com>
IL USA - Monday, August 02, 1999 at 12:53:13 (PDT)
This is wonderful!!! Wish I could have had some of this information when son was dx.
Luann <Lyg33 @AOL.com>
USA - Monday, August 02, 1999 at 11:27:07 (PDT)
I am so pleased that have finally put all the information down that you have been storing in your head for all these years. You are one brillant woman and all us parents are so grateful for your knowledge and help! thanks!!!!
Rose <Dawl House@aol.com>
Boca Raton, FL USA - Monday, August 02, 1999 at 07:37:13 (PDT)
Blessed, you have articulated so well what my own parents 'knew' intuitively: you learn and do what you can to make life the best it can be, and then you go on with it. You accept 'differences' for what they are, merely differences, some more difficult than others. But, above all, you love your child. The older I get, the more I appreciate that, and the wonderful life that they encouraged me to find. (And I did.) Nice goin', Blessed. You have presented a balanced point of view that can't help but help us all.
Kathryn A. Taubert <kataubert@prodigy.net>
Newtown, CT USA - Monday, August 02, 1999 at 06:48:58 (PDT)
What a wonderful, reassuring, informative website...thanx
Kristi <reddfish@bellsouth.net>
Homestead, FL USA - Sunday, August 01, 1999 at 19:51:58 (PDT)
Nice work!! The perfect outlet for you to show your genuine concern for those persons and families who are less affected by the symptoms of TS and it's frequently associated disorders. I sure wish I was one of them!!
Brenda <Loftware@aol.com>
Germantown, MD USA - Sunday, August 01, 1999 at 19:20:48 (PDT)
It's a beautiful website, great inspiration. You have done a wonderful job! I'll definitely direct people to it.
Pat <pparent112@aol.com>
USA - Sunday, August 01, 1999 at 10:09:29 (PDT)
Looking on the "bright" side is our "MO". This website reinforces what CAN be achieved. Thanks!
Debbie <vigeant@worldnet.att.net>
ri USA - Sunday, August 01, 1999 at 07:52:39 (PDT)
were your ears ringing last night? i had dinner with 2 other moms fom the parent soup board and we were wondering when we would see this come to fruition! congratulations!
wendy <zwobodas@aol.com>
USA - Sunday, August 01, 1999 at 06:34:42 (PDT)
Well done, BB2!
Brenda <Cyberbren@aol.com>
USA USA - Sunday, August 01, 1999 at 04:21:24 (PDT)
You have done a great job on your web page and I wouldn't change a thing! Thanks for always supporting, caring, and being there.
Theresa <Coachmic97@aol.com>
NY USA - Sunday, August 01, 1999 at 02:56:57 (PDT)
Great website. Very well planned out. I'm sure it'll soon be one of the top TS websites, in fact.
Sandra Croyle <scroyle909@aol.com>
Hawaii, HI USA - Sunday, August 01, 1999 at 02:27:19 (PDT)
Very nice. You are so articulate. Thanks
N Welch <NanlorW@aol.com>
USA - Sunday, August 01, 1999 at 00:20:21 (PDT)
I wish I could have read this in 1/98 when my son was diagnosed. Great job BB2.
Lynn <DLTRMOSK@aol.com>
NJ USA - Saturday, July 31, 1999 at 21:05:08 (PDT)
I love it! It is great to share with others that are in the same neurological boat! Thanks.. Ellen
Ellen <Ellen McN@AOLcom>
Bensenville, IL USA - Saturday, July 31, 1999 at 20:57:14 (PDT)
Great job!!! As always, I love the positive approach you have....
DDale <DDale98678@aol.com>
WA USA - Saturday, July 31, 1999 at 20:15:14 (PDT)
I'm very impressed with this site. Thanks for your effort, and I appreciate the support provided.
Ellen <nelly35>
MA USA - Saturday, July 31, 1999 at 19:11:19 (PDT)
Just wanted to make it official that I visited your site.
Gary Marmer <gjmarmer@flash.net>
Phoenix, AZ USA - Saturday, July 31, 1999 at 12:31:31 (PDT) 

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