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Hi, Anyonw interested in talking?

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  • Hi, Anyonw interested in talking?

    Hi, My son is 6 years old and has been diaganosed with TS. We noticed he started to roll his eyes just over a year ago. Over the past year the tics have changed from eye rolling to throat clearing, and whining sounds.
    I am interested in talking to other parents about how their children are doing and any treatments that seem to help? He seems to be functioning fairly well at school. He just started grade 1.

  • #2
    Interested in Talking

    My son is also in Grade 1 and we are just now in process of having a diagnosis. As I said in another post, he had so much going on in his life that we were working through that we didn't pay much attention to some of his "habits" or "quirks" but this past spring and summer he matured in so many ways, able to control his impulses and listen so much better. Then he got a cold and after he kept sniffing and it was driving us crazy, I felt horrible when I realized he couldn't stop. Then it changed to throat clearing and now he does such a harsh gargle/throat clear that the speech pathologist is afraid he is going to harm his vocal cords. The past few days it was so bad he was having trouble talking. I had follishly thought I was getting used to his Tics and didn't realize it was more because he was going through a period of waning. When he started waxing again I felt so helpless and so bad for him

    What kind of doctor gave your child their diagnosis? Did you have any trouble getting a diagnosis? Does your child just have TS or do they have other special needs (if you don't mind my asking?)

    Comment


    • #3
      Hi, Anyonw interested in talking?

      Hi,

      The canadian tourettes website, gave me a name of a doctor at Children's hospital in Vancouver. We corresponded by e-mail and went to see him last summer. At that time he had only been rolling his eyes for a couple of months. However it has been over the year mark now. The tics came all of the sudden?Fortunatley, he does not have any other problems. How about your son?
      He never really complains about his tics, occasionally his throat gets soar.
      Where are you from?
      Are there any treatments that your doctor has suggested to you?

      Thank you for replying, it is great to talk to someone.

      Comment


      • #4
        Hi, Anyonw interested in talking?

        LCooke

        Sorry it took me so long to respond. I was all stressed out about our appointment with the Psychiatrist that we had today. I don't know why I get worked up about these things, she just told me what I had already figured out for myself. It was good to hear confirmation that what ds has are Tics and that he cannot help it. It doesn't change who he is or how we interact with him - but it is good to talk to someone who is experienced with this. Because our ds' tics are not interfering with his day to day life at this point there haven't been any real suggestions other than ignore them as much as possible. Because he also has symptoms of ADHD we have had him on a low dose of Ritalin for a while and we had to discuss whether or not to switch him to Concerta to help him all day at school.
        As I was searching the web I came across Dr. Duncan McKinley, a Psychologist who also has Tourettes. He has a practice in London, Ontario (we are also in Southwestern Ontario) and he has an amazing website
        www.lifesatwitch.com - if you haven't visited it you might find lots of helpful information. It's so nice connecting with other parents dealing with the same concerns :D

        Comment


        • #5
          Hi, Anyonw interested in talking?

          Hi
          I'm new to the message board. I am from Nova Scotia and my 10 yr old son was diagnosed with having ADHD 2 yrs ago in June. At first I didn't know what was going on. He was having so much trouble in school, with bullying and just not being himself. When he was first seen by his doctor he put him on ritalin twice a day. That did not do a thing for him. Now he is on slow release ritalin taking it just once a day. That worked for a yr., but he will soon need the dosage increased for he has taken a huge growth spurt thru the summer.

          Last yr. he was doing alot of different things, like sniffing all the time. I thought he was doing it for attention. But soon found out he had TS. He would make ungodly blatting noises, roll his eyes back in his head, his chest muscles would tighten up and quiver. To tell you the truth it scared me. Now he is into throat clearing, and repeating after the other kids. He had very bad mood swings too. He is not on no medication as of yet to treat his TS. His doctor said over time his tics may get worse and when that time comes he will be put on something to help control things.

          I brought books from the Tourette Syndrome Foundation of Canada and it had helped me understand more of what he was going thru. So we as parents are not alone. The more we can learn about this the better is it for us.

          Comment


          • #6
            Hi, Anyonw interested in talking?

            Hi...my name is Leah. My son is 8 and has just been diagnosed with TS and ADHD. I posted in a separate thread and then decided to post here too. My son jerks his head, blinks his eyes, when he walks he does a funny pattern with his feet, he screeches, when talking shouts random words out, repeats words or phrases to himself and smell things all the time. Whew....that is alot LOL He doesn't do it all at once of course. It is nice to see other mother's going through the same thing. Makes me feel not so alone.

            Leah

            Comment


            • #7
              Hi, Anyonw interested in talking?

              Originally posted by LeahAJ
              Hi...my name is Leah. My son is 8 and has just been diagnosed with TS and ADHD. I posted in a separate thread and then decided to post here too. My son jerks his head, blinks his eyes, when he walks he does a funny pattern with his feet, he screeches, when talking shouts random words out, repeats words or phrases to himself and smell things all the time. Whew....that is alot LOL He doesn't do it all at once of course. It is nice to see other mother's going through the same thing. Makes me feel not so alone.

              Leah
              hi....my name is mark.my 12 year old son as full blown ts and adhd.daniel(my son) also shouts radom words alot of swearing repeats himself most of the time,also smells everthing he gets is hands on.but he is so high on life and fun loveing, at times i just fill up in side and want to cry.he as 3 sisters who understand what he is going throug also my daughter who is 15 years lends an hand in school when he gets picked on(thats my girl)
              again danny as tried all the medication going but nothing as worked,so at this point in our life's we are just trying to get on.it is nice to see im not the only one going throug it,no douht i wont be the last

              Comment


              • #8
                Hi, Anyonw interested in talking?

                Hi everyone....I am new to the message board and would welcome chats with other TS parents. We have a 10 year old boy with TS plus. The plus being OCD, anxiety, sleep difficulties, trichotillamania, and rage. Currently my son takes, luvox for OCD and anxiety, risperadal for tics and rage and melatonin for sleep. My husband and I are on the executive of our local TS chapter and have taken several parenting special needs children courses. As well our son and us are or have been involved in speech therapy, occupational therapy, physical therapy, group social skills classes and Cognitive Behaviour Therapy since he was 6. He is currently on the waiting list for anxiety group therapy. He left school in kindergarten in order to attend a communication/behavioural class at a rehabilitation hospital for four months and was also hospitalized as an out patient for four months last year in order for his doctor to get a handle on his issues and medication requirements. I am looking forward to sharing information and strategies with the members of this group.

                Comment


                • #9
                  any suggestions about rage

                  HI everyone,
                  like all of you here,I have a young son 5 1/2, who has been diagnosed TS+. He keeps us very busy with his rage and aggression. He has been through 2 years of early education and is now in a split EE kindergarten program( not being sucessful). We have tried so many meds and different therepy programs and still nothing seems to help. His older sister hates him(she is 12), and we have a 7 month old baby. Jordan is so violent and out of control we have nothing sharp(knives, forks, cork screws) in the house where he can get them. He spits, eye rolls, blinks, counts and repeats everyone. Some people in our family think we are nuts, but we keep protecting him(love him with all our hearts). We are having some real bad times this week and he is being admitted to the hospital again on Monday. This time long term 3-6 months. His school IPP had no educational goals for him because his behaviors are so bad, they need to have that under control first. Have any of you had any success with any sort of meds for RAGE. Any suggestions would be great.

                  He is taking: nortryptaline, amitryptaline, clonidine.
                  we have taken: melitonin, respiradol++++ so many others

                  We are now afraid of our son and that is not something I ever thought possible.

                  Worried in Edmonton
                  PS: Tourettes Edmonton is a fantastic group-looking forward to more help

                  Comment


                  • #10
                    Questioning spouse

                    Hi my son J is 9 and was diagnosed earlier this year. We had been living in Vancouver and searching for answers for years. We had a great Dr and Psych and since preschool had know we had a "spirited child". The diagnosis for several years was non classic ADHD and gifted but when he was 7 the counting and other subtle tic behaviours began. It was so subtle that Tourettes was discussed and then written off. The only thing I had ever seen on Tourettes was on TV (Ally McBeal). So last year when we moved to Spruce Grove things really began to get out of control we went searching again. We now know a lot more about Tourettes and know that he has T+ (ADHD,OCD). I am so glad to hear that the Edmonton Chapter is awesome as I am off to my first meeting tonight. I am finally thru the numb stage, and am at the roll up the sleeves and get on with it stage. My husband is still unsure that this is the right answer for J. Has anyone else gone thru this????? Also are grandparents allowed to chapter meetings if they live in different cities???

                    Comment


                    • #11
                      Hi, Anyonw interested in talking?

                      TSFC support meetings are generally open to anyone who is interested. Grandparents, other relatives, teachers, friends, etc. It does not matter if they live in the same city as you, or in another location.

                      I can guarantee that you will find people at the meeting who have experienced similar circumstances. We have all been through various stages of the diagnosis, denial, hopeful, despairing, feeling helpless, energized, etc. etc. etc.

                      Comment


                      • #12
                        Hi, Anyonw interested in talking?

                        Hi, totally new to message boards. Hope I do it right. I am in conflict with my family right now, whether or not to go ahead and have my 8 year old son possibly diagnosed with TS. I am thoroughly convinced that he has it as he has had simple and complex, motor and vocal tics for at least four years (that we've noticed). ( Smelling, kissing, grunting, humming, feet and head and shoulder ticcing, one tic or another....)
                        My family thinks that if I take him to a doctor about it, we are labelling him and he will feel like a freak etc..... They say that because he is home schooled and lives a good and relatively normal life, the diagnosis could actually cause more problems for him later on.
                        I want the information and support from a doctor and support group that I think I could get by having him diagnosed.
                        We can live with the tics but is it possible that we could be doing more harm by making a big deal out of it? Has anyone had any experiences that they could share about this?
                        I'm really saddened by what I perceive is their lack of support and could use any advice any of you have for me. Thanks.

                        Comment


                        • #13
                          Hi, Anyonw interested in talking?

                          Hi Judy:

                          Personally I feel that if your son has TS no harm can come from being "officially diagnosed". On the contrary only good can come from it. Your son most probably is already aware that he is different from others. There is no reason for him or your family to feel embarrassed about the TS. With a diagnosis he and others he comes in contact with will then have a reason for the things he is doing and can not stop. Although he is homeschooled at the moment that may not always be the case. Eventually you or he may want to attend a school in the community. He most probably will want to attend college or university. Eventually he will be out in the work force. I know all of that is far down the road but I guess what I am getting at is he can't live in a protected bubble forever. The more information he and you have about TS the better equipped he will be to handle the outside world when the time comes. You may want to visit the website lifesatwitch.com. Dr. Duncan McKinlay who set up the website lived with TS all of his life and was not diagnosed until his late teens. There is some good reading on there about what he went through growing up undiagnosed. I noticed that you are from Alberta. If you are in the Edmonton area you can link to the Edmonton chapter of the TSFC website for information about support meetings for parents in Edmonton.

                          Comment


                          • #14
                            Hi, Anyonw interested in talking?

                            Hi Judy

                            I agree that you should get a diagnosis and join your local TS chapter. I am glad that we did. The support has been great. You meet other parents and children and you see their children doing exactly what your child is doing and you realize that, yes, it is the tourettes that makes him do this.
                            My son was diagnosed when he was 7, he is now 12, but it was only in the last year that he would admit that he has TS. The first few years he had different movements, and they never seemed to bother him. The vocal tics he has now are bothering him a lot more than the movements ever have. With being older, he gets more embarrassed by them.
                            We didn't talk about the Tourettes much for a few years, cause my son has always been kind of hyper and most people didn't even notice his tics.
                            Now these vocal tics are hard to hide....
                            It's great you can home school your child. I wish I could for a couple years, because my son is having a hard time at school. This year his teacher is finding his TS hard to accept.
                            Wish you the best.

                            Comment


                            • #15
                              Hi, Anyonw interested in talking?

                              Originally posted by LeahAJ
                              Hi...my name is Leah. My son is 8 and has just been diagnosed with TS and ADHD. I posted in a separate thread and then decided to post here too. My son jerks his head, blinks his eyes, when he walks he does a funny pattern with his feet, he screeches, when talking shouts random words out, repeats words or phrases to himself and smell things all the time. Whew....that is alot LOL He doesn't do it all at once of course. It is nice to see other mother's going through the same thing. Makes me feel not so alone.

                              Leah
                              Hi Leah, I'm Tracey. I also have an 8 yr old son. He was diagnosed in 1st grd. but started showing tics when he was 3 (eye blinking) his tics vary, like most kids, from blinking, eye rolling, head shaking, neck shrugs, vocal tics, like grunting, shreiking and throat clearing, he also did spitting for awhile, and still smells things and his fingers most of the time, at school he tends to destroy his erasers and tears paper into little bitty pieces when stressed (he now has a stress ball, and a little cloth bag his teacher made him to keep his fingers busy)
                              I am very glad I came here to this board and know other kids smell things and spit and that these are tics. I thought they were.
                              My son can be ODC about certain things (lucky not many) but, he also tends to worry a lot.
                              What has helped with his self esteem is, the class did a presentation on "What It's Like To Be A kid With TS" Lee, my son, got a chance to tell his classmates(most have know him since starting school) what it's like to be him. At this age we worried about kids separting themselves from anyone different.. this helped and taught awareness to his peers.
                              I am new to this site, but was wondering if there is anyone else out here that has TS and Non Verbal Learning Disorder(NLD) this is what my son has. I know of TS sites and support groups and NLD sites and support groups, but as of yet, haven't met anyone else that has both of these.

                              Feel free to email me anytime. I am just across the boarder from the Prescott/Cornwall crossings..(USA side)

                              Thanks,
                              Tracey

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