Does anyone have children (son) with Tourette Syndrome?

Gloria - posted on 11/05/2008 ( 76 moms have responded )

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My 10 yr old son was just diagnosed with Tourette Syndrome, is anyone out there dealing with this? My son has mild symtoms right now, but I believe that can change.

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Elena - posted on 05/13/2013

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I'm 32, living in Hawaii, and my 11 year old son has had tourette's for almost 2 years now. Just as I had read and his doctor confirmed as he starts to go through puberty because of the changes in his hormones his ticks will and has become more frequent and more mulitple ticks develop. However there is a good chance that as he matures and his hormones settle down to a more normal level his ticks should improve and in some cases they have even stopped after the child matures. I was wondering if anyone's child with tourettes is also having behavioral problems and difficulty in school. We have made special accomadations with the school and staff but it is still a challange to get him to do work and he is about to fail the 6th grade.

Libby - posted on 08/23/2012

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I'm new here but I have a son that was diagnosed at age 4. I was diagnosed at the same appointment at age 43. We are blessed that we are both very mind and that made it easy for me to go so long without knowing I even had Tourette's. I sniff, clear my throat, and squeeze my eyes shut. Can you imagine how many allergists I have been to? I also went to many eye doctors. When our son started rolling his eyes we thought it was adorable. When he kept it up we had his eyes checked. When he had perfect sight we went to the pediatrician. They sent us to a neurologist. The neurologist watched us both as we chatted, asked some questions and said Tourette's. I was relieved as mine had never really been a problem. As he grew his eye ticks became more pronounced. They are still quite mild and don't bother him as he knows what to do. When someone asked him (classmates etc.) he just says that sometimes his eyes hurt and rolling them makes them feel better. Nough said. He is in 5th grade and has lots of friends, plays sports etc. We have learned that when he is tired, excited of angry they are more pronounced. He does not have a special diet or routine. We let him set his own pace at life and luckily since he is a calm, self confident child with no OCD and no ADHD this has worked well for him. He is comforted by seeing my ticks and realizing that no one else sees anything wrong. We have been told that his ticks may become more as he hits puberty and then they tend to fade again. We are blessed in that he was diagnosed do young. He has never known life without Tourette's so it is normal for him. He is also lucky that most of his friends have been with him this whole time. For us we have found that ignoring his ticks and not asking him to stop has really made him more relaxed. His comfort level is directly related to the intensity of his ticks. I confess though that I worry about new ticks developing as he ages into puberty. I guess we will deal with these thing when and if they do arise. I hope this helps someone. Sniff sniff wink wink. Thanks for letting me share.

Julie - posted on 11/23/2013

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Im dealing with a very similar situation. My son also was diagnosed with ts,adhd,ocd, and social anxiety disorder at the age of 6.he is now 12 and in 6th grade as well,he went from honor roll k-5 to failing it feels like overnight. Im having my 1st parent teacher conference of the year this monday.i had no probelms with any teachers up until now his last progress report was outstanding. I was floored when i got his report card and suprised that his teacher felt now was the time to finally reach out with concerns and not weeks ago as she watched my son struggle and his grades decline. Its killing me to know he is trying and the only thing he hears from her is lil more effort as he cried to me saying but idk what she means by effort ugh...any suggestions other than for some reason lack of communication between the teacher and myself? Every year but this o
ne he had an assignment that i went thru nightly and signed after completing any homework that was due. The school provides this with his text books included with the cost...

Barbara - posted on 05/01/2013

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I just wanted to add this post, in case, it can help any of you.

My son as TS - induced by PANDAS. It was very acute and followed after a few months of tics.

Please look up PANDAS/PANS symptoms and see if any of these are similar to your children.

I really feel that many children are not diagnosed correctly and maybe some of the children with TS can get relief from antibiotics and/or IVIG.

Read the book, "Saving Sammy; the boy who caught OCD", by Beth Maloney.

I wish all of you the very best.

Loli - posted on 12/01/2013

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Hi Julie,
I have a son who was diagnosed with Tourette syndrome at the age of 6. Since then the symptoms have progressively worsen. He is now 13 and in the 7th grade. I quit my job and am homeschooling him. He is very intelligent and the public school system did not have the resources to accommodate his needs in order for him to learn. My son was an A student and his grades declined to a C student which the school found acceptable because he was still "passing". My son would come home crying out of frustration and say he could not keep up writing with the other kids. Or his medication made him sleepy and he fell asleep in class. I will never forget when his teacher told us, " your son is learning 50% of 50% of the time". When we heard that, we knew that we had to take control of the situation.

We first went through all the procedures and obtained an IEP for him. So when he did return to public school, he would be given any accommodations if he needed them. I have a bachelor's degree in business and have never taught. I am not a teacher. But my motivation was my son's education. We took a deep breath, I quit my job and started homeschooling him. It has proven to be a challenge because my son has tics that prevent him from writing. So, I have to do everything on a dry erase board or be creative in my teaching methods. But you learn to accommodate your own child. When my son is sleepy, I have him take a nap and we have class when is awake. We have a retired math teacher teaching him Algebra twice a week. (I know my limits)

We have been homeschooling for 1 1/2 years now and he is happier. He does miss being with other kids, but he also said many weren't his friends, they just tolerated him. He has other outside activities to keep him busy. Every other year we are still required by the state to have him tested and his scores were above average in most areas with the exception of writing and reading comprehension.

Anyway, I do hope you are able to work something out with the school. They are suppose to make the necessary accommodations for your son. But if all that fails, do consider homeschooling. Our goal is to ultimately get him back into public school if the tics if not, we won't. The point is for you to take control and not allow the school system to be in control, I hope that helps.

Loli

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Jasper - posted on 05/21/2014

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Wow these posts really hit home for me, i myself was diagnosed in 3rd grade with TS. I had a very hard time in public school being bullied and was not learning anything so in 3rd grade i was enrolled at a Waldorf School and that the best my parents could ever do for me at that point.

it is common for children with TS to also have OCD, ADHD, and/or behavioral disorders. i personally have TS with acute ocd + adhd as well as learning disablities such as dyslexia. despite all of that my ticing has subsided over the years and am now almost tic free at 21 as well as going to college. tics are really just something you have to accept i know it was really hard for my parents, most of all my father who thought i was just an idiot most my childhood. as it would turn out my brother four years younger would end up having TS+ OCD too so luckily for him my parents already had a good head start.

words of advice to any parent reading this out there is to become an expert on TS, speaking as a child who grew up with TS i would rank this as #1 most important thing my parents could* have done regarding me and my TS. understanding TS can really help one accept what is and what is not TS. it doesn't take long for a child with TS to accept their tics because they truly have no say in whether they tic or not (not true you can mentally suppress tics but it will put you under a lot of stress and that skill comes with time) however it may take the parents a longer time to accept.


I have spent many days researching TS to better understand myself over the years and TS still not much research has been done no TS, so take what you read on the internet with a grain of salt.

i can report that TS is when the frontal lobes of the brain form abnormally and that TS can be accompanied by OCD and/or ADHD and/or personality disorders. if your child has TS look up "Frontal lobe" and read what it does, i noticed a direct connection to things i have trouble with and processes the frontal lobe handles i.e. socially acceptable behavior. also if your have TS+ ADHD then it is very likely you will also have learning disabilities.


a mater of fact a large majority of children with TS are mentally gifted for example in elementary school they wanted to hold me back every year up but my mother fought them to pass me even though i was the furthest behind student in my class then the school had me take an IQ test and i placed the highest they had ever seen in the schools history.

tics can be motor or verbal, meaning movement or sounds. saying words like in tv shows poking fun at TS is extremely rare but sill possible. tell tale ticks are ones such as: rapid blinking, shoulder shrugging, small humming kind of sounds, sniffing, and chattering teeth. these are all classic examples of tics. any unintentional repetitive behavior is usually a tic. also i have been told that when my tics where bad i would tic in my sleep. if you are unsure if your child has TS bring them to a neurologist.


stress and anxiety are a huge factor in tics severity. as well as sugar and what ever you do STAY AWAY from HIGH FRUCTOSE CORN SYRUP! as well as ASPARTAME! the artificial sweetener these chemicals will set off tics like nothing else can. i also noticed a decrees in tic severity the more active i was. too much TV makes tics worse.

also i do not recommend pharmaceutical tic medication! in my opinion the side affects heavily outweigh the benefits.

i would NOT* recommend this for children for obvious reasons but it has been found that in many cases cannabis (pot) has been found to be very beneficial to individuals with TS. from experience i can confirm this.

i wish you all the best of luck with understanding TS.
the worst part is not knowing! its all uphill from there!

if you have any questions please email me at jedwardsc2011@gmail.com i can hopefully answer any basic questions you may have about TS. i wouldn't have written the post had it not been something im passionate about so please email me with questions!

thanks Jasper

Victoria - posted on 03/31/2014

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Hi, I was wondering if anyone could help me please?
I have noticed over the last week my 5 year old son has started twisting his head like a twitch and also blinking vigorously and shrugging his shoulders all at the same time. When I ask him shy he is doing it he gets very angry and says he doesn't know.
Also last night he was laying next to me watch tv and his head started going again and I could here him grinding his teeth and then his arm started going aswell, u was really horrible to watch. It was as though he was oblivious to what he was doing at first, he was just watching tv but after a few times of doing it he was getting really frustrated and it was making him angry, it was if he was trying to stop it but couldn't. He was also saying random things but I couldn't make out what he was saying and then he was slapping his hands. I'm also wondering now if his sniffing has anything to do with it because he has been doing this for weeks, constantly sniffing.
He has an appointment to see the doctor today but ton be honest my doctors are rubbish, so I'm looking for some advice because I am not having the doctor send me away without the right diagnosis.
Thank you

Maddy - posted on 03/15/2014

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Help! :(

Think my son has Tourette's haven't a clue what to do or how to handle it we are completely in the dark and don't know where to turn, he's 8, had tics for 3 years doctor treated me like I was over reacting and he now has his first ever vocal tic which is swearing :(

Holly - posted on 02/28/2014

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My 7 yr old son was recently diagnosed with a tic disorder. He had a sudden onset (over night) of facial grimacing and eye rolling. It has been a long month waiting to see the peds neurologist.
I'm looking for good resources to teach my son about his disorder. My son is also a twin whom doesn't show any signs of having a tic disorder but wood benefit from learning about tics.

Michele - posted on 02/12/2014

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My son is 12 and started tics at age 13 months overnight with strep. He also has ADHD oppositional defiant and Tourette's and aspergers. He is very anxious too. He is a tough kid to handle cause most of his trouble is behavioral. I put him into a special needs school. That helped his stress level. He still comes home and is irritable And difficult and says inappropriate things. This could be a tic but he doesn't do it at school. I would like suggestions on dealing with bad behaviors. He won't stop.

Anna Marie - posted on 01/02/2014

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i hope you get the help and advice needed it is a constant battle when all you want is to get help for your child my heart goes out to each and everyone of you as i as a mother am going through all the emotions under the sun just tyring to manage each day and get the help that we need for our son he is 9 has ASD and has now been diagnosed with OCD and now wondering if tourettes, waiting for CBT to begin and then appointment with phyciatrist ? in february but everything is so slow, he has lots of obsessions and has started eye blinking does things 6 times if he doesnt get it right he then has to do it 36 times if not right then he has to do it till it feels right he has to bow his head in a strange way when leaving a room and walk down stairs with his feet side ways so they dont over hang the stairs or he has to start again , symetery plays apart , he repeats begining letters or evevn sentences . the worst is bed time where he has to bang his head on his pillow till it feels right then if he moves he has to do it again , thats just a afew things sorry if im on the wrong site but just needed to let it out x

Kristen - posted on 12/08/2013

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My son has Tourettes, he is 7, but his tics started at 8 months. It took us until his 7th birthday to get a diagnosis, as no one had ever seen tics start this young. He also has OCD, but is doing fine in school, other than handwriting, and a little attention issues. We are lucky to have a very supportive school and his teacher is awesome. Anyone else out there have a child whose tics started in infancy?

Alisha - posted on 08/28/2013

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My 9 year old son was diagnosed at age 5. His tics were so bad that he could not have succeeded in school - noises, intense stuttering, physical movements, extreme OCD, etc. We chose to medicate -because he wanted to- and have tried many different medications, most of which had awful side effects. However we found Intuniv, which was orginally made for kids with ADHD but they found that it worked great for tics. It helps him immensely. You start on a very low dose of 1mg and then when they get used to it, you move up. We stayed on 1mg for a while, then moved to 2mg and were on that for 2 or more years. The only side effect is that it makes him tired when he starts a higher dosage until he gets used to it. Only last year did we have to move to 3mg. It completely takes away most of the tics and also helps amazingly with concentration, attention span, etc. He still has breakthrough tics (mostly verbal but very slight) when he is very stressed - like new school year, etc. I would ask the child what they want to do - even at age 6 when we asked him if he was interested in taking a pill that might help, with no hesitation he said 'yes!'

Glenda - posted on 08/21/2013

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Hi, Julann I have a 8 year old son who has ts. He was diagnosed with ts when he was 6. I have a very hard time also sending my son to school knowing he is going to have his tics. Last year every morning after dropping off my son to school I would want to break down and cry. One night after my son got home from school he broke down and cried to me saying the kids kept asking him to stop making his cough like sounds. The next day I went into my sons school and had a meeting and they made a 504 program up for him and they went into all of the 2nd grade classes and educated the classes. After that my son seemed to like school a little better and even said the kids started being a lot nicer to him and didn't ask him to stop doing the tics he had for the day. His ticks range from eyes blinking to head turning, to making coughing sounds. I don't know where you live and if your sons school has a 504 program for kids with ticks and such, but might be something you can check on. It has helped me a lot with feeling more comfortable about sending my son to school everyday.

Jodi - posted on 07/08/2013

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My son was diagnosed at age 9. He is now 23, We have been through the school difficulties, medication side effects etc.Our story is long but so very real. It's tough dealing with all the people our kids come in contact with especially when they are school age. Anyone who is reading this...please know you are not alone. It's been a very long road for my son but he has been able to live a "normal" life. Yeah, he tics but that's just "him" he is accepted and anyone who knows him is amazed at what he has accomplished.

Samira - posted on 06/12/2013

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Hi my name is Samira, My 8 year old 3rd grade son was diagnosed a month ago with Tourette, we live in Venezuela and here there is no support group or anything about tourette. I decided that I didn't want to put him on any medication; from the research I did, many of these drugs have side effects and I didn't feel comfortable with him taking any drugs and all his tics are simple, he don´t have complex tics. he's having serious issues with paying attention, hyperactivity, and behavior, I think we can try first with homeapathy, but sometime I'm second-guessing my decision. Am I doing him an injustice by keeping him off medication? his tics are going to be worst or he is going to keep this level? Do the benefits outweigh the risks? I am at a loss of what to do. I want medication to be a last resort. because i read all the things that moms put here and aparently the medication don´t solve the problem.

I'd like to hear from other mothers of young kids with Tourette who medicate and those who don't. What are your experiences with using medication to help control your child's Tourette symptoms? If you don't use medication, how do you help your child cope with his/her tourette? Thanks for all of your input.

Jessica - posted on 04/30/2013

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Yes I have two kids with motor tics my 12 year old and my 9 year old. One has eye blinking which gives her headaches and sore eyes and my son has head twitches. It's hard sometimes with the schools and their confedience at school with other kids.

Barbara - posted on 04/24/2013

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Hi Julann: Your post about your son sounds exactly what my son is like - he is only 6 and suffers from tics and some anxiety issues. He had a real bad case of head jerking and eye blinking this week. I have been reading about how to ease his tics and it's nice to see what other people are doing to help their children. It's very heart wrenching to see your child go through these issues, especially at school. Thank you for not making me feel alone while going through this.... Barbara

Julann - posted on 03/24/2013

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Thank you Kati for the encouragement. I am struggling with the unfairness of this for my son. Honestly, it kills me to have to send him off to school having to deal with the tics. I am still looking for my own place of peace with this. I am so sad all the time worrying about him.

Kati - posted on 03/22/2013

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Julann, my son, now 15, and a freshman in high school, was diagnosed in 5th grade with Tourettes. It was so scary in the beginning, as he had severe anxiety and embarrassment about the diagnoses. When we entered into 6th grade, and middle school here, it changed. We had no choice but to embrace the diagnoses and have open communication with the school. We didn't want him labeled a trouble maker or disruptive during class due to a condition that was out of his control. The school counselor, an amazing support system for us, took my son around to all of his classes, maybe a quarter into the year, and discussed the matter with each class. The reason for that was due to the stares and peers asking why he would do certain things. Her feeling was that kids make comments and stare because they don't know what he is doing, why he's doing it, but that it was out of the every day normal behavior of most of the class. Once the peer were educated, they stopped acknowledging that it was happening. They might see it but realized that was part of him and his anxiety reduced a great deal. I'm not saying there wasn't the occasional mean kid, but for the most part, it was a non-issue. He continued to make and build friendships and no body really gave much thought to the the fact that he had Tourettes. The tics have reduced as he's gotten older (13-16 are to be the hardest times for them as their hormones are going crazy with puberty). He has occasions that he might have quite a few, but he can mask them more now, it seems be easier for him to manage and control. We also encourage and allow him to be very active. He wrestles and plays golf. The more activity he does, as has been the case since about the 6th grade, the less tics he has. Golf, although it may not be a overly strenuous activity, has been amazing therapy for him. He has to put so much concentration into it, that the tics seem to take a back seat. We were amazed!

Everybody is different about how they handle it. We embraced it because it was a reality and we didn't want him to think we were embarrassed about it. We discussed it like we discussed the weather, and tried not to make it a main focus. I told him often how it did not change the person that he is and that it would not keep him from doing anything that he wanted in life. We have not allowed him to use it as a crutch, although we are very supportive and allow him a lot of room. He does have some ADHD and OCD issues, both somewhat minor (at times no so minor). We have seen his neurologist on several occasions, he tried some medication, but has decided he does not want to take any. I do practice some vitamin therapy, which he believes works pretty well, and therefore we continue with that. He continues to move forward and we see great progress. I know in the beginning it can feel so hard and helpless, but it can get better. It will get better! Our kids are so strong, they are fighters, and I'm sure your son will continue to fight and inspire you!

Julann - posted on 03/22/2013

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Wow Heather thanks for the encouraging words. I look all over the internet and see so many disheartening things about kid suffering from Tourette's. The basic literature I read says many kids experience reduced tics as they get older. I can only pray that is what my son will experience. But there are so many personal stories out there of people having such a hard time with it. My son is in therapy. We are trying a new counselor because the old one was nice but not very effective. I am still struggling with how to talk to my son about his diagnosis. Also whether to offically notify the school. They have been very supportive when I talk to them about his anxiety. I guess I am petrified he will be labeled. Also about confidentiality. Do I embrace the Tourettes and shout it from the rooftops?

Heather - posted on 03/22/2013

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My son was diagnosed with tourettes at 4 but started tics at 2.5. He now has ADHD. He is six now and in kindergarten; his school has been very supportive. They spoke to the kids about tourettes and is in a couple PT, OT and speech as well as seeking these services through our health care. One thing we did that I think has been beneficial is sending him to behavioral theraphy. We know how difficult tourettes is and he shows no self esteem issues but has been showing difficulties reaching out to peers for friendship. Behavioral counselor isn't too expensive and we see our twice monthly teach him to reach out to peers, handle his frustration with tics appear in class and overall check in with his self esteem and confidence. It's amazing how the couselor can bring out communication and true feelings of our lil guy better than we can. Kids self analyze them self and can keep this stuff inside; add a diagnosis that even more separate themselves from peers and it makes for the worst. We are hoping to raise him confident and keep his high self esteem... Family support is huge but I think counseling is very important as well.

Julann - posted on 03/22/2013

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My son has had tics since he was 5 or 6. I guess my husband and I knew the Tourette's diagnosis was coming but we kept hoping the tics would go away. Waiting for that year to end was torture. You know the year where the transient tic turns into something more? My son is now 9 and his tics are mostly throat clearing, sniffing...an occasional shoulder shrug and eye blinking. He has others but they come and go. I am sure I don't need to express how much it breaks my heart to know he has to deal with this. I would take this away from him in a second and take it on myself. He has moderate anxiety too. His anxiety tends to be the thing that separates him from his peers at times. As far as I can see no one has teased him because of his tics. Of course I hold my breath every day waiting for him to tell me someone made fun of him. He is very bright, funny and does well in school. He hates school though...often says no one likes him ( a function of his anxiety and that seems to be better lately) He prefers not to be alone and is reluctant to go far out of his comfort zone unless he is forced by circumstance or after hours of convincing to try. He does have friends. He seems to be a happy kid as a general rule since he has a very loving family and we continue to help him with his self esteem. I guess my biggest fear (sometimes it is all I can think about) is how do I help him to keep on the right road and not let his anxiety or tics get the best of him.

Cindy - posted on 03/17/2013

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Hi Gloria,
my name is Cindy. I can only tell you what has been our experience with our son.
At first he was doing silly things and repeating sayings. His favorite was, "whose a good dog." He would change the influx of the words making it sound different each time.
Later I found out it was a symptom of Tourette's. I asked him why he repeats phrases or words and he said, "it feels good in my throat and head." Next I asked, "what would happen if you didn't say it"? He said, "my shoulders start to hurt and then my neck. Sometimes when I'm in school, its really painful, because I never do it there. I only feel safe to be me at home."
His actions, phrases, bodily movements seem to rotate and change. At times my husband and cant wait for a new "tic" to show up, because which ever it is that he has at the moment, is really driving us crazy.
I personally do not get phased in any way, by the things he (has) to do. My husband on the other hand, has needed to leave the room, stay in his (at home office) and work a little longer, and at times he may just have another beer.
I have found out that there are many children today that have family members with this same diagnosis. Luckily my son thinks highly of himself and feels that if who he is bothers someone else, it's their problem not his. He just continues being himself.
I hope that my rambling helps you in some way.
Good luck and remember your son needs to know that who he is, is not judged by things out of his control. Also that he is loved no matter what.
Take care,
Cindy

Mary - posted on 03/17/2013

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I have a 14 yr old son who was diagnosed with Motor Tic Syndrome when he was 8 . He didn't have the vocal tics so was not given the diagnosis of Tourettes although I told them he had been doing the throat clearing and grunting a little when he was younger . At the moment he does not appear to be ticcing but refuses to attend school and gets a lot of migraines . I have checked on Pubmed.com and there has been a study into migraines and MTS/MTD that shows 4 times the incidence of migraines in this group . Also I see that Strep throat has been an issue for some of you and he had this at least 2 yrs ago when his major dislike of school started showing up . We had his tonsils removed last May and he has been absent from school so much since with more sore throats and migraines than ever ... there is so much more I'd love to tell but I don't know where to start . He is extra bright and plays me for a fool quite a lot ,mood swings and anger are a big feature of his behaviour . A very non-sociable boy all up . Quite the opposite of his older brother .

Kati - posted on 03/15/2013

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Jennifer, my son had verbal and motor tic when he was younger. Both were somewhat disruptive at times. One thing that the teacher allowed him to do was test outside of the classroom, in an empty classroom, when he was younger. My son is very intelligent as well, but the tics were interfering with his ability to completely concentrate, partly because he was concerned about the tics. Being able to test in an empty classroom (teachers helper or someone in there to watch or answer questions) relieved a lot of anxiety for him and he performed better. They can have tics as needed, not disrupt anyone, and do their best without any added stress. Maybe your son's teacher will allow that for his testing and that's even a thought for next year and state testing! Please feel free to contact me on this thread or message me directly. Sharing ideas is so important and having someone to talk to that understands can totally help keep us pushing forward and positive!

Jennifer - posted on 03/15/2013

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Kati, Thank you so much for your story! So inspirational to hear that your son is doing so well. I love that you are his hero. If you don't mind me asking what sort of tics did your son do when he was younger? Right now my son is in the 2nd grade and does more vocal tics than motor. In school he will hide the tics that are not "normal" sounds but for coughing, or clearing his throat sort of thing he lets them out, which is what he is doing a lot of right now. It is still at the point where it is not disruptive for class or his friends so that has been a relief. But his teacher is concerned for next year when he will have to take state testing. My son is an intelligent student and pushes himself pretty hard, but he hasn't done well on certain tests lately which surprised his teacher. She is understanding with this and is willing to work through whatever we need.
Thanks again for sharing!
Jennifer

Kati - posted on 03/15/2013

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Jennifer, I undertand about being concerned about suppressing the tics while he's at school. My son, now 15, use to do the same. Once he came home, sometimes he would have non-stop tics as he then needed to get them out. We allowed him the space to do that without questions about it or even acknowledging that it was happening. I always told him it was best NOT to suppress, but they so want to be "normal" and was going to do it regardless of what we said. The older he has gotten, the easier it has gotten for him to mask the tics, but I am not sure how much he suppresses. Between ages 13-16, puberty for boys, is to be some of the hardest times for them. We made an effort to keep him and allow him to be as active as he wanted, physical activity was probably the best thing for him. The more he was active, the more he was able release and his tics really did minimize. Not always, but a great deal!

I mentioned before, the more students and peers know, the less likely they are to treat him like an outcast or treat him differently. They stare and ask things like, "why do you do that?", because they are uninformed. Although my son was worried about telling classmates, doing it in a group setting with the school counselor present and doing the talking, his peers were informed, never asked another question, and he felt a GREAT amount of relief. A lot of the looks and whispers disappeared. WE were so thankful for having such a wonderful support system with his school at the time.

Encouragement is the greatest gift we ever gave him too. Just telling him he could do whatever he wants, it would not stop him and it did not change who he was... I never knew how much of that a he carried with him until last year when he was applying to get into a private high school and he said I was his hero. I was his hero because I gave him unlimited support and told him that he could accomplish anything he wanted and that TS would not get in his way if he didn't allow it. He did get into the private high school and he aspires to be a doctor.... He is reaching high and he does now believe he can do it. Don't get me wrong, he has his bad days and /or weeks.... But he knows that he cannot use TS as a crutch and that all he has to do is keep moving forward. THERE IS A LOT OF HOPE, even though I know it feels hopeless at times. I read a lot and tried to educate myself so that I could, in turn, help him.

Best of luck! You son, Jennifer, sounds like he might be a lot like my son, and that strong will is going to take him far!

Jennifer - posted on 03/15/2013

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I have a 7 year old son who was diagnosed a couple of years ago with TS. He has pretty mild tics right now and is doing really well in school. I make sure I have a very open communication with his teachers and the Principal at the school. The thing I worry about is he suppresses his tics while he is in school, which our neurologist is pretty amazed about with how young he is. But I worry that it is so hard on him while trying to do his school work. He is a great kid and has many friends and is very active. I do worry about how it will get the older he gets with testing and harder work. I know with stress it tends to get worse. One thing our family did when he was first diagnosed was we sat with our son and had him think of something to say to kids if they ever asked him about the noises he was making so he could be prepared and wouldn't feel uncomfortable or "on-the-spot" and have nothing to say. He is pretty comfortable with his tics and we let him know that he is very loved no matter what!

Rebecca - posted on 03/09/2013

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Kati... Thank you so so much for your love and caring... I will definitely continue to keep in contact with you by email... Thank you again for being so loving and supportive. Much love to you and your loved onesss... Love Rebecca

Kati - posted on 03/08/2013

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Rebecca, I understand you fear about school and the kids he is around. I also TOTALLY can relate to the school being mean. I truly think Tourette's is something that people are not fully capable of understanding. NO MATTER what school they are at. There are so many levels that go with Tourette's .... We had a guidance counselor in 6th grade that suggested we go to every class and tell the class why it was that he had tics. If they had questions, they could ask too. Before that, peer would comment and stare. Once students are informed, they are more likely to dismiss anything that they might see happening, because they know. IT WAS AMAZING of how things changed once we did that. He felt more confident because the staring and comments stopped (for the most part, you still have a few mean kids).

And the anger from you son, I have had to deal with from my son as well. I think they are confused and just down right MAD that they have to deal with this. IT DOES get better. I constantly told my son that Tourette's did not define who he was as a person. That he can still conquer anything he chooses in life. I have really found out that the more physical activity the less the tics. He ABSOLUTELY needs an outlet. He is not on medication for ADHD because they do, more often than not, make the tics worse. We eat a paleo diet, for the most part, and do vitamin therapy to help. He manages pretty well. He has some anxiety and OCD, nothing too severe, but the activity level helps him a GREAT deal with all of it. Also, the older they get, the more they are able to disguise and/or mask their tics, which helps a lot.

Its hard to talk to people about this if they aren't dealing with it because it is complicated, frustrating, confusing and sad at times. Most people, adults included, thinking it's a person shouting out random swear words. People are not educated about it, it's an underground issue that no one really talks about. I think people would be amazed of how many people actually deal with this issue. Please feel free to email me at anytime if you want to talk about it, vent, share ideas, etc. You aren't alone and I promise it will get better!

Kati - posted on 03/06/2013

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Rebecca, please email me directly at katihill@yahoo.com. I would absolutely like to respond to your comments and let you know you aren't alone. I will lend an ear and share our experiences and maybe something will help!

Rebecca - posted on 03/06/2013

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Thank you Kati... It is so so bad... The tics the ADHD... He is hanging around kids that do pot .. I stay home so scared that I dont know what to do... At school he is acting up.. The school is very mean... It is another UCLA group school under therapy school... for children with social emotional problems... Im so scared.. He is so angry ... I cant talk to him or anyone else..

Kati - posted on 03/05/2013

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I have a 15 year old with Tourette's. He was diagnosed in 6th grade, wherein he had pretty bad and noticeable tics. He tried Orap, which helped, but made him gain a significant amount of weight. Now, although our neurologist told us between 13-16 were some of the hardest times for boys suffering from Tourette's, he's learned to manage them pretty well. It's hard to even know he has Tourette's. when his hormones are going crazy we notice some. Part of why helps him, we believe, is his level of physical activity. The more active, the less tics. He is a wrestler nd a golfer, both seem to really help keep the tics calm. Golf allows him to focus so much on swing And aim , as well as calming him so much, that its been very therapeutic! He uses no medicine, we have adopted a paleo diet, taking out processed food and grains (glueten), which we believes helps as well! I'm always open to share thoughts or listen. I remember how hard it was a times for him early on!

Rebecca - posted on 02/19/2013

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I am in the same situation as you are... I am currently at a UCLA help group school... He was moved three days ago to another UCLA group school because of his tourettes and ADHD.. They juster transferred him to a therapeutic school with children with social emotional challenges... He always makes bad choices and has very bad friends... Im so scared he is on his way to jail and he is only 15 2 weeks ago,, The tourettes has ruined his life. Life is so bad... I cry everyday... it just seems to get worse and worse..

Rebecca - posted on 02/17/2013

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Yessss... My son also has it... Im so scared because he doesn't understand things and it also came with ADHD,,, He isn't doing so well... Very scared and terrified...

Lashanda - posted on 01/12/2013

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Hello Moms, My name is Lashanda Greene Scarborough. My son Hunner has both Verbal and Physical Tourettes (TIC)s. We didn't know what Tourettes were until about 4yrs ago. His symptoms began as like a alligie cold. The was clearing his throught all the time and playing with his nose. So i took him to his doctor and she said that it was seasonal alligies. Well she put him on medicaton for alligies which made it worse. So his symptoms then began to be eye rolling, clearing his throught, playing with his nose, face movement. Well after a year of no improvement we got to go see a Nero doctor for help. She said that he add ADD and Tourettes. Tourettes- Were you have both physical and Verbal tics. Terettes- Only one or the other Physical or Verbal. So we placed him on medication for both ADD and His Tourettes. The ADD made his Tourettes act worse. The medication alone helps him out a lot. But if he becomes stressed about anything School, Homework, Sibling Fussing, will raise his Tourettes to become more prone to acting up, but excitement is also just as bad as the stress. Still to this day even with medication he's Tics are Eye Rolling, Head Jerking, Right Arm and Shoulder Jerking, Noise Playing, and hair playing but he is also seems to be on edge. His Shoulder and Arm movement really hurts him. It contracts his muscles in his are so hard and for so long that he began's to hurt from the contracting until hes in tears. He sometimes can get loud with me but my son is an easy going child and I know its not him meaning to misbehave. Parents that have children with Tourettes or Terettes should do a lot of studying on the Disorder. Go to utube and look up children with Tourettes to also learn more. Plus children with this Disorder is no different from children with out. So do not make them feel out of place are that there is something wrong with them. Talk with your children and allow your children to watch videos also. Because when you do it lets them know that they are not alone, and they are not different just specially made. This will help them in may ways understanding them self and there Disorder.

Amie - posted on 12/26/2012

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Hi Gloria - my son has TS+; PDD-NOS, Anxiety disorder, and TS+. Along with that of course comes OCD and ADHD.

So you could say our hands are full. :)

Blossom - posted on 12/25/2012

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amie
my daughter is 6 and half yr old. she started ticcing last yr same time in december. doctor said to watch for 1 year and when ticcing continued doctor declared it to be TS. her tics as of now are mild , so didn't try any medicine but now for past 1 week i started with homeopahic treatment but it takes long time to show any effect might be 6 month or 1 year , so really cant say how things will be after some time. Is ur son TS+ or only TS?

Amie - posted on 12/25/2012

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Hi

I just joined and touched by your email as it hits so close to home for our 7 yr old son.

Now that 4 yrs has passed can share how everything is? Do you have any best practices to pass along?

Blossom - posted on 12/24/2012

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My daughter is also diagnosed with TS as she is ticcing for past one year without any tic free period. I have started using homeopathic medicines for past 1 week and i think it will take few months to show effect if any. Is there any mother who tried with Homeopathic medicines with positive results?

Dawn - posted on 12/08/2012

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Hello All,



My daughter was diagnosed with Tourette Syndrome at the age of 5. I could tell you the excat date and time I was told. School age children please get an IEP from the school; if anyone gives you a problem with that find an advocate. Most states have a Tourette Syndrome Chapter. If the school district doesn't want your child in their school they have to pay for that school and provide transportation to the school. My daughter has been diagnosed with anxiety, depression, ADD, ADHD sucidial, violent..almost every letter of the alphabet. She has been on so many drugs it is unreal, medication to treat high blood pressure (used for Tourette Syndrome) to a drug that made her look like a herion addicate. Her tics have been so bad and painful (and currently are now) to the point of hitting her chest with such force you can her the hollow sound of the thud. Mom's this part maybe hard but if your spouse or significant other is not helping or making matters worse loose that person. If isn't worth it. The care giver of for the child needs a support system as well. The people in my life has told me that it was my fault, I didn't correct her enough, I wasn't understanding, I was hard enough. I looked and looked for a cure, changing medications (because most of the side effects are terrible) changing doctors. Prior to her graduation she went thru 4 different school. What I have found with my daughter is things need to be consistant. If things are going to change she needed to be told in advance which was not the case in the public school system or the private one for that matter. Correcting her; what I am talking about is the behavior not the tics) There are certain behaviors that are not acceptable such as violence (which we have been there) My daughters perception of emotions and others body language is totally off the chart. She has gone thru all kinds of test, eye doctors, getting her hair cut thinking her hair was in her eyes (eye tic).







I have had every type of law enforcement at my house over the years with the exception of homeland security. She has been in and out of psych units many times (they didnt fix it actually they made me mad.



Keep in mind for those newly diagnosed that tourette syndrome is a wide spectrum and even is at the bottom of the autistic spectrum as aspergers. The only symptom that creates the diagnoses of T/S are the tics and the other comorbid "disorders" are possible. If your child was diagnosed with T/S doesn't mean they will eventually have depression. As for ADD and ADHD I thinkis an unfair diagnosis. If your child is sitting in class trying to control the tics and is not paying attention.



When things are calm for Bre she is an amazing individual.

Lena - posted on 11/20/2012

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Yes I have a 7yr old that was just dignosed with Tourette's Oct 9th of this year he also has ODD & possible ADHD this is very difficult for me & Im still trying to deal with it I have a 2yr old son & a baby on the way I get tired of having to deal with the outbursts & his teacher doesnt help nor do the kids in his class I have had him in a outpatient treatment center. But since today resulted in the school police having to be called Im going to transfer his school & hopefully have a teacher that can work with him since the school he's currently in doesnt seem to help us. I myself am looking for help with these issues.

Justine Van - posted on 10/25/2012

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Yep. My son has Tourettes. It was first diagnosed as a tic disorder. In a lot of ways it's not noticeable, he just seems sensitive and sometimes has small movements. He is worried about what other kids think, and we would like to meet others like him for playdates. We are in Northern Cali. Penpals are fine too. Our kids are all beautiful! Glad to meet you, Justine (Mom)

Sylvia - posted on 09/25/2012

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hi yes I do. the problem is, hes my step son. and really has a though time, due to his mother making things very difficult for us.

hes better and the ticks change from swearing to face pulling to other things, hes on good medication and has good days.

but SEVERE mood swings and anger. concentration is low, but hes a very clever boy.

ive coped with allot of things in life, but This is a 100% challenger of Note. i wish i had answers and must say sometimes feel like i'm the ONLY person in the world on this situation.

he's JUST turned 10 and ANGER and Shouting now set in. is it Hormonal? should i go back to the doctor?

Wendy - posted on 08/21/2012

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My son is 11 and was diagnosed at 6/7. I live in Mesa, Arizona. Feel free to friend me on Facebook if you like (http://facebook.com/wendy.killeen). My son began junior high Aug. 8 and it's already a battle with attitude, tics, anger, OCD, ADHD and then add hormones to the mix. I'm attending a junior high parenting workshop tomorrow night at the school counselor's office and am very much looking forward to it. We have another son who's 10 and I am frustrated at how much attention our older son is getting because of his anger. I don't like how he treats his little brother at all and I'm aghast at how he treats me. I'm at a loss. Of course, dad's his favorite because he has more money than me, more games, less rules and dad has also tried to be a mediator and told me it's my fault pretty much -- and right in front of our son. I've also been asked what I did to piss my son off. I feel hated, disrespected, frustrated and sad. Tonight my eldest son doesn't even want to be at my house. I'll be enjoying time alone with my youngest son while I look forward to the seminar Wed. night. It's a difficult time, indeed. Mild symptoms began with our eldest too. They do change and with stress, anxiety or even excitement, they can greatly increase we've noticed. Rage increases in kind. Sorry my thoughts are all over the place.

Cindy - posted on 08/20/2012

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yes I do! my son has both Turrets and ADHD. luckily our household is G rated. My sons "Tics" are mild but annoying. He makes Phonic tics. He makes sounds that "feel good" in his throat and mouth.
I too believe we can help our children stop these symptoms completely.
I am going to attempt to eliminate the food colors associated with the conditions and look for foods with less than 4 ingredients in them. Less is more, (so they say) The biggest problem is that my son only eats chicken strips, fries, tator tots, strawberries, apples and other fruits. Hot dogs, aka pigs in a blanket and corndogs. on occasion he will eat peanut butter sandwhiches and grilled cheese and of course mac n cheese.
What are your childs symptoms?

Kerry - posted on 08/17/2012

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My son is 14 years old and newly diagnosed with tourettes...he also has an obsession with dust...if he finds it he has to clean it up. We were told to sit back and wait for an appt made by our family GP for him to see a pyschiatrist at CAMS. Daniel is very smart and i am extremely proud of him but i worry about his future...will the tourettes get better or worse...will he draw attention to himself at school with his tics and not being able to control the grunting sound he makes from his thoat?? Children can be really cruel if they want to be and i'm dreading the summer holidays ending and returning to school. I would love some advice from someone who understands how i feel and or offer some comforting advice from one understanding mum to another...my love for my son is right off the scale and i'm finding it difficult to cut the apron strings...people keep telling me to let him go and find his space...i know i should...he means the world to me...even though he has had tics and vocal outbursts for a while now i still wasnt expecting the diagnosis to be Tourettes...are schools understanding about this??

Annette - posted on 08/03/2012

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If anyone wants to chat one-on-one, my email is: katkopy@hotmail.com. Juest put the subject: Tourette's syndrome so I can weed it out of all the other email I get.

Annette - posted on 08/03/2012

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Thank you all for the insight. My son is now 17 and the tics are worse than ever, to the point of being painful. I don't know of any other parent's in the area dealing with child who has Tourette's, so thanks also for the words of understanding. Love and light to you all!

Angie - posted on 08/02/2012

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I am 36 and 6 months pregnant with my first baby (a girl). I also have tourette's so I know firsthand how frustrating and depressing it can be for the person who actually has it. My symptoms were very mild when I was young and I was not even diagnosed until I was 21. It has been a long and sometimes extremely difficult 15 years since then. I do believe I inherited it from my mother's side of the family...she doesn't have it but she does have a couple of brothers who very obviously have facial tics although they have never been treated or diagnosed with it. The major tic for me is eye blinking to the point that I can't drive, have a very hard time reading or even watching t.v. I get headaches as well. I have had other tics come & go...right now I have a muscle tightening problem which is driving me crazy and I also do this weird breathing thing that can be very tiring. I was on meds for 14 years that did control the tics but decided to go off of them because ultimately they are not good for you. I was on risperdal for a year & then zyprexa for 13 years. They made me gain about 70 pounds and I literally could sleep for 18 to 20 hours a day. They also made me zombie like when I was on the highest dose, I seriously had no personality. I am telling you this because I would suggest trying to treat the symptoms without meds if at all possible. The side effects can be too damaging. I did have success with Botox injections for my blinking but I am not sure if this is something recommended for children, definately something to think about for the future though. It has been 10 months since I went off zyprexa & I was tic free for quite awhile....the blinking actually just started up again a few days ago. As frustrating as it can be (and as painful sometimes) I am going to do my best to stay off the medicine. I am worried about passing it on to my baby, but I guess I will have firsthand experience with how to help her deal with it if it does happen. So, really all you can do is to continue to love, support and advocate for your children.....They will turn out just fine!!!! This may even cause them to excel and be more determined than "normal" children, which is always a good thing. Maybe talk to the Dr about whether or not an activity like dance class or something along those lines would be helpful in them learning to control their muscles and movements. Anyway, I wish you all the best of luck!!!

Patricia - posted on 06/27/2012

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My 11 year old daughter was diagnosed when she was 8. She also has ADHD and it is difficult to figure out which of her behaviors are impacted by one vs. the other.

Beverly - posted on 06/26/2012

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My daughter was diagnosed with tourettes at age 8 due to strep. It has been so hard to deal with. Her doctor did not diagnose her with the strep and with it being untreated it caused her tourettes. She is now 10 and it has changed our lives.. she has also been diagnosed with PANDAS.

Melissa - posted on 06/18/2012

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My son is 6 and when he was 4 we had him tested and they said he has Tourettes and OCD. He has always had his tics. I just thought it was him being a boy. We did teach him not to tic at school. I know that sometime he can not help it. He knows that he can do his tics at home anytime. I am still learning about it. I can not find a person that handles just in Tourettes. I would love someone to talk to with this. I would love to find some that is dealing with this.

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