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Tourette Canada Online Forum is a free, safe, moderated online community where registered users can exchange ideas, information and support about issues related to Tourette Syndrome. Tourette Canada has recently changed the server and refreshed the pages so returning members will notice a brighter look. Tourette Canada welcomes back two former moderators, Janet Rumsey and Cathy Wylie, to the Forum. Their knowledge and insight will serve the Tourette Forum participants with dedication and expertise.

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  • I am new here!

    My son was just diagnosed with Tourette's last Friday. He is 8 and in grade 4. He has a wide range of tics but the worst is the loud vocal screaches. I just got back from meeting with the Principal and VP at his school and they are lost. I explained it all to them and they asked me to ask him to obstain from the loud vocal noises while in class. Is this possible?? From reading I know it is possible for short amounts of time. They have agreed to have someone from the Tourette's Foundation come in and talk to the teachers but don't feel it is necessary to do one for the students? I don't agree and if problems continue I guess I will have to ask again. At what point to you turn to medication? His psychologist has put him on Sequel (sp?). Do you think this is right or should I wait? Should I be teaching him to obstain? Or should I just wait for him to do that on his own? He also has ADHD. Which he wants to medicate him for later after we find the right med for him for the Tourette's. Is this wise? Sorry for all the questions I am just a little overwhelmed at the moment. Any advice would be appreciated.

    Thanks, Leah

  • #2
    I am new here!

    Hi LeahAJ
    Read your note....I know what you are going thru. My son is almost 12 and was diagnosed with Tourettes when he was 7 and in grade 2. He has mainly had minor motor tics, but shortly before school started he developed vocal tics. Swearing, and also muttering. When he is really ticcing, sometimes he can hardly talk....just nonsense comes out, and then he will finally manage to say what he wants to say. Some days he is OK, and hardly has any, and other times they are very bad. He is worse at school, and he cannot seem to hold them in. He says he can't help it...
    He also has ADHD. He is on medication for that, and it definitely helps....but the side effects are he loses his appetite, and has trouble sleeping. We are now trying something for the vocal tics, but I am not sure yet if it will help. It's tough on everybody. We also are having a hard time with our school understanding this. My son's teacher has him out of the classroom with an aide for almost half the school day, which my son hates, because he feels he is missing out on what is going on. Our local TS chapter is great, we get a lot of support from them. Good Luck and hope things work out for your son.

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    • #3
      I am new here!

      Does he have a problem with the volume of his vocal tics? Is he able to do them more quietly? Just wondering because my son's school wants him to tone them down. Is this something that is possible? I don't want to ask him or try to force him to do something he cannot do.

      Thanks, Leah

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      • #4
        I am new here!

        Hi Leah
        Yes, my son does seem to be able express his vocal tics more quietly than what he would. when he tells me he can't help it, I try to encourage him to tone his voice down. It wouldn't hurt to try it.......
        It does make you feel awful when you've punished your child, and then you realize it was a tic and they couldn't help it. My kid has had a lot coming his way from teachers, friends, etc. telling him to stop it, it's just a bad habit, etc...you can't blame them for getting frustrated.

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        • #5
          Have an in-service for the students

          Hi:

          I'm one of the people that provides in-services for the TSFC. I would strongly recommend that you have an in-service for the students in your child's class.

          The other kids are going to notice the tics -- how could they miss a screech? It is far better if they understand the reason your child tics. That way they are going to be much more supportive.

          My son also has a tic that causes a screech. When the other students in his class understood why he did the things he did, they found it much easier to overlook. When the other kids in the class don't know about the TS they tend to get frustrated with the TS student and make fun of him.

          Ask the person who is doing the in-service to talk to the teachers about doing an in-service for the students. The teachers will have a different perspective once they learn more about TS in the classroom.

          Cathy

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          • #6
            I am new here!

            That is what I figured also. I am hoping that once they receive the inservice themselves they will see how important it is for the kids to learn too. The school sent him home again today. The medication is making him very drowsy and they say they can't teach him in that condition. So they sent him home with homework and I had to find a sitter and go back to work. GRRRRRRRR I hope this side affect wears off fast!

            Leah

            Also I forgot to add that in class today he was quite creative in covering the screeches LOL He told me that he would move his chair so that it made a sound and screech at the same time or that he would wait till the teacher was talking to squeal. Although I am quite sure the class still heard the tic it makes him feel more comfortable.

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            • #7
              I am new here!

              Leah please view my previous post under teasing. It is definitely a GREAT idea to have your child's classmates educated about TS.

              Comment


              • #8
                i'm new here also..

                Hello everyone! My son is 14 and was diagnosed 8 yrs ago......after struggling with many differents symtoms i'm finding that every few yrs he developes new one that replace the previous. When he was six his tics were a problme as well as his adhd symptoms. Now that he's a teen we're noticing some rage issues and having a real problem finding a physician who can help. J's been on ritalin since six, and recently changed to Concerta because his school wants no part in making sure he takes his lunch time meds (very frustrating)! although this works well for his concentration.....his rage is becoming a problem. I'm in Victoria, BC and am having great difficulty finding a Pediatrician who has enough experience to help him or give us options to consider. As far a as i know the few doctors who were capable of effectively treating TS are no longer here. Is anyone else having physician problems and are as frustrated as i am?

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                • #9
                  I am new here!

                  I am sure you will find that problem no matter where you go! It is hard to find good doctors that truly understand TS. Alex is off all meds now. We tried him on Serequel and Orap and the side affects were horrible. Since his tics don't seem to be interfering with his daily life and the kids at school seem to be used to it we are just going to let him tic for now. It doesn't seem to bother him much.....just the people around him LOL. His pediatrician says to me the other day "this is not good.....look at him tic...." I don't understand this. It is not bothering him so why medicate him? We are waiting to get into Regional Children's Centre here in Windsor, Ontario. Once in he will get a full assessment and perhaps some psychological testing to see what help he needs in school. So things seem pretty calm here for the moment.

                  Leah

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                  • #10
                    I am new here!

                    I am new here too. I am anticipating a diagnosis of Tourettes for my 4.5 year old son. We have an appointment with our GP on Wednesday and will be referred hopefully. I am pretty sure my son does not have ADHD, is this a must for Tourettes? My son has been "shuttering" for close to 2 years and in the last few months has definite tics and has an elephant noise he does. The worst times for him are driving in the car and when he is happy excited like scoring a goal, anticipating a surprise etc. If anyone could suggest a good Neurologist in the Vancouver, Richmond Delta area in BC I would be greatful, actually I would travel anywhere.

                    I do want to comment on LeahAJ child's school. I am a little shocked that they asked if he could be quiet in class. I was pretty sure most people are aware of Tourettes these days to a certain degree. The kids need to be taught acceptance, our school has kids with various conditions and the kids are surprisingly wonderful about them.

                    Also, a month or so a go I watched a program with a man who had terrible tics, no vocals. He couldn't even walk down the hallway at the hospital his tics were so bad and sitting in a chair was non stop movement for him. He went to a Dr who tried the Parkinson's surgery that stops the tremors on him and it worked, he was a new man, tic free. Did anyone see this program, I can't remember where I saw it but it might have been on TLC. I would like to know when it might be on again or where I might get a copy or info on it.

                    Thanks.

                    Comment


                    • #11
                      I am new here!

                      Hi Sandee:

                      You do not have to have ADHD to have Tourette. About 60% of people with TS have ADHD, so that means about 40% do not. ADHD also shows up in a number of ways, so you may find that it is a factor.

                      The program you are referring to may be the special on Brain Stimulation. It was a special on Good Morning America. Check on the TSFC website (www.tourette.ca) under Media Releases for more information on this. This was an extreme case of TS.

                      Good luck with the referral for your son.

                      Comment


                      • #12
                        I am new here!

                        Thanks for the info Cotw.

                        I was thinking about taking in video tape of my son doing his tics or better just having it in the video camera so we can watch it in the operatory. I am concerned his tics won't be active that day and it will all be for nothing.

                        I was also reading on another website that there are other condition similar to tourettes that aren't, does anyone know what those might be? One is Aspergers I think but my son is strong socially, verbally and doesn't really have anything he obsesses over or gifted in any area that I can tell.

                        My son is very mellow, loves to play with other kids, loves to play alone as well with his army men and dinosaurs. He is normal to above intellegence for his age. Just thought I would add that incase someone was thinking of another syndrome might son might have.

                        Does amyone know if they do genetic testing to diagnose this?

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                        • #13
                          I am new here!

                          Sandee...funny you should mention about the car. My son seems to tic alot in the car as well. Seems silly doesn't it? And as far as not showing symptoms in front of the doc this is not uncommon. For some reason people with TS often don't tic in front of the doc or at least the severity seems to wane.

                          I am having a rough time right now. Maybe it is the holidays. We are around so many people. People you don't see very often...maybe only a couple times of year. They all remember my son as this happy, out-going and rambunctious boy. Now there is this boy who can't seem to control his body. It all came on so fast. Now they look and stare with pity in their eyes. I HATE IT!!! There is nothing wrong with my son...he does not need their pity! He is the same little boy he was last year when they saw him. He is still smart and out-going and fun loving, caring and sensitive. But all they see is the way his body shakes and twitches. And offer advice on something of which they know nothing about. Sorry for the babbling.....just needed to vent!

                          Thanks for listening,
                          Leah

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                          • #14
                            I am new here!

                            Vent away, I'm sure I will return the favour at some point. My mom is already feeling sorry for him, "ahhhh the poor little guy".

                            Am I to expect my son's tics to get worse? He has been ticing since a toddler and is now ticing a bit more. Family still don't really notice cause it looks like a reaction to excitement, except for the one that he does behind his head and messes his hair up. I pointed it out to my sister inlaw and she said I have boys in my class who do that, they have Aspergers. She said my son is too social and has too much eye contact to have Aspergers in her opinion.

                            Does you son play sports or music? If so how is that effected by his tics? Are your son's tics triggered by excitement as well like my son's. Watching a top spin, anticipating the winner of a race, applause are a few excitement type of things that trigger him. He also gets really upset when he sees mushy things on TV, even cartoons. You know when the hearts come out of their chest and the blink showing they like someone. He sometimes screams, I hate that!!!!! My son also has a hard time calming down when he gets mad and hits walls and messes things up. Doesn't throw things but messes.

                            Comment


                            • #15
                              I am new here!

                              The tics get worse and better...it is like a roller coaster ride. Alex's tics get worse when he is excited or stressed. His vocal tics tend to come out when he is in situations where he has to be quiet. This is really hard for him to deal with as it embarrasses him. I find when he is really concentrating on something his tics lessen. He does quite a bit of swimming but no music. His Grandmother also feels sorry for him....she says she is worried about his future. Makes me mad....he will be just fine! God never gives us more than we can handle...that is what I tell him.

                              Leah

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