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Need a Connection with Other

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  • Need a Connection with Other

    Hello Everyone:

    I am a mom with a 9 year old boy who has been diagnosed with TS. I am happy to finally figure out how to talk with you as I am from a rural area with not much help available and no one to really be able to talk with. The closest avenues are 2 to 3 hours away.

    My son Nathan is on clonidine at present. He started back in April on 1 pill a day and is now up to 3. At this time it seems to have greatly reduced his tics.

    I have noticed on various occassions that when out in the cold weather some of his tics seem to be more noticeable. Is there any connection there or is it just me??

    Sometimes I wonder if he should be on medication or if I should have found some other route for his situation. I guess I worry that I am making decissions that might not be in his best interest.

    Can you help set my mind at ease?


  • #2
    Re: Need a Connection with Other

    Welcome to the forum Liz!

    Whether or not to use medication is a very personal decision. Together with your doctor you need to weigh the benefits and side effects carefully in order to decided what is best for yor child.

    My son is 12 with TS Plus and does take medications for his OCD. We have chosen not to medicate for tics as the tics do not bother my son. They bother us sometimes and his teachers however it is similiar to living beside train tracks you will get used to them in time and eventually won't notice them as much.

    Our decision to use medication was a very difficult one. Once we were able to fully understand that TS is a medical condition that sometimes requires medication (just as epilepsy or diabetes might) we felt better about it.

    It is my belief that if your child's symptoms are causing him difficulty (not the people around him) then medication may be the right choice. I also feel that medication is not an answer all by itself and counselling/therapy sessions should also be considered in order to help your son learn to deal with his symptoms and accept himself for who he is. Building up his self-esteem I feel is one of the best things you can do for him. Your doctor should be able to help you with this.

    Getting infomation is the best way you can help your son and you have made a good first step in joining the forum. Browse through past postings as there are many discussions that you will find helpful.

    The Tourette Syndrome Foundation of Canada's website can be reached here where information and links to other sites that you will find helpful can be found. You can also purchase publications through the site that you will find useful. Understanding Tourette Syndrome - A Handbook for Families and Understanding Tourette Syndrome - A Handbook for Educators can be purchased here These are great resources and I found both very helpful both to us and the school.

    I have not heard that cold makes tics worse however everyone is different. Tics do wax and wane minute to minute, hour to hour and day to day. Stress and other factors will cause tics to change over time. Your son may go through tics free periods as well as times when his tics are more apparant. This is normal.

    I know this is a very hard time for you and your family. Connecting with others who are going through the same things you are is a great source of comfort and I am glad that you were able to find us.



    • #3
      Re: Need a Connection with Other

      Hello Patti

      Thanks so much for answering. I recall reading your message, after reading your reply. I was all over today reading tons and tons of messages. There are so many heartbreaking stories and I wonder if I will be one of those people especially the heartwrenching ones where their child is ridiculed by others.

      I think that is why I went with the meds so that Nathan wouldn't hopefully be picked on by others. I know that last year a couple of kids started unconciously picking up on his ticks and doing them themselves. He changed schools this fall and I was really worried that he would have some problems as I know that stress and anxiety are a trigger.

      Sometimes I just go through stages where I think "Does he really have TS, should he be on the meds ect... ect..

      Please tell me if you can, do fears (which he has lots of) and (after reading other stories) about forgetting homework and books and stuff, and also something he mentions is that he understands his work at school but has a hard time when he comes home understanding/comprehending (??) his homework and a lot of the time it takes me forever trying to explain it to him. He will go on and on and on after I have already told him what he needs to do. That also happens with many other things he can't seem to grasp right away. He can also go for HOURS on the same subject eg.. he will ask me something when he gets up and will stay with it ALL day until I find the item or have the answer that satisfies him. (It absolutley drives me CRAZY.) He also when certain things arise will only take my response and only mine even if someone else has the right answer. (This also is hard to handle as it takes him awhile as it seems to comprehend the answer.) I guess what I am asking is are these things possibly related to TS or one of the other disorders such as OCD???

      I appreciate any help you can give as I don't know who else to ask and I don't want to phone the drs. office all the time and it is so nice to talk with people who know what it is like and might possibly have or are going through similar things.

      Thanks Liz


      • #4
        Re: Need a Connection with Other


        Welcome to the TSFC Forum and we are glad you found us. We'll be pleased to be your information resource and to try to point you in directions where you can get the most benefit for your son.

        Are you living in Canada or in the U.S.? Have you looked into any local Tourette support groups?

        The decision as to whether to treat Tourette with medication or not depends on how your son's Tourette and associated disorders affect his quality of life. By consulting a physician with clinical experience in treating Tourette and by informing yourself about Tourette and the options in treatment, you can have a meaningful conversation with your physician to examine the benefits vs risks of various treatment options.

        As you may know there is no canned recipe for treating Tourette and every person has to be evaluated based on their own situation.

        last year a couple of kids started unconsciously picking up on his ticks and doing them themselves
        Pretty much par for the course among school kids. There were kids mimicking my tics fifty years ago in school and kids are doing it in 2006. Generally this occurs when fellow students and teachers are uninformed or ill informed about Tourette Syndrome.

        An in service presentation to the teachers and students where Tourette is explained often creates awareness and reduces the senseless ridicule and emulation that sometimes takes place.

        In Canada there are trained In Service presenters across the Country available to TSFC members. In areas where there is no presenter, the program can be purchased from the TSFC National Office (800) 361-3120 and can be given using a DVD player, and TV.

        Are you satisfied the physician who diagnosed and who is treating your son, Nathan has clinical experience and professional interest in Tourette Syndrome?

        TouretteLinks Forum


        • #5
          Re: Need a Connection with Other

          He can also go for HOURS on the same subject
          What you are describing could be perseverence. It is common in people with Tourette and Obsessive Compulsive behaviours. It is certainly worth talking to your doctor about. People can have Obsessive Compulsive behaviours without having the full-blown disorder of Obsessive Compulsive Disorder.

          Some of the other things you mention are also common. A suggestion for the problems with the homework -- if your son truly does not seem to understand the homework when he gets home you should talk to his teacher. Set up a way to send messages back and forth -- either in his agenda/planner or communicate by email. He may be having some memory problems or he could just be over stimulated from trying to cope with school and unable to settle enough to concentrate on his homework. Most teachers do not want their kids to be spending all evening on their homework. Your son may need some extra help during the day to get the work done.

          One pyschologist I heard speak at a TSFC conference said that if you are spending several hours working on homework with your child to try to help them keep up, you should be working with the school to get other resources in place for your child. Homework should not be taking over the whole evening or weekend -- especially in elementary school.

          Is he able to complete the work when he goes back to school, or does he still struggle?

          Forum Moderator


          • #6
            Re: Need a Connection with Other

            Hi Liz:

            Cathy & Steve have both come up with some good points and suggestions.

            With regards to the incessant questions and seeming to not comprehend his homework I have a thought for you to consider. Does your son ask these questions because he truly does not understand or does he just need to seek reassurrance repeatedly?

            In my son's case (he has OCD) he will repeatedly ask questions when he knows the material and when he knows what he is supposed to do. At times it can be very frustrating so I know where you are coming from. I find that even though I have just given him a simple instruction 2 minutes later he is asking me again, and again, and again. My son is a "doubter" which is common with OCD and a good part of his day is spent questioning.

            My son also needs tasks broken down one at a time. Especially new things due to Executive Dysfunction. If I give him too many instructions at a time he can now at 12 recognize that and will ask me to slow down and wait for him to complete the first item.

            Executive Dysfunction could be another reason your son is asking questions with regards to things you have already told him.

            Is your son also asking "too many" questions at school as well?

            You should definitely discuss all that you are seeing with your doctor. I find that keeping a diary of symptoms helps enormously. I keep anecdotal notes and print them off for our doctor to take to our appointments. This has really been helpful.



            • #7
              Re: Need a Connection with Other

              Welcome from me too..... My son has TS, OCD and ADHD plus a few learning problems. He is currently on meds for his ADHD and OCD we did try him on meds for his TS but he had to many side effects so we stopped them and because I am homeschooling him he can Tic all day at home and feel comfortable so for us that was the best option. His OCD is causing him the most problems now.

              My son asks hundreds of questions a day, at the moment he is allowed to ask 5 questions every 15 minutes, next week it will 5 questions every 30 minutes until we can cut them back. He will also ask the same question over and over again throughout the day.

              He will go on and on and on after I have already told him what he needs to do. That also happens with many other things he can't seem to grasp right away. He can also go for HOURS on the same subject eg.. he will ask me something when he gets up and will stay with it ALL day until I find the item or have the answer that satisfies him. (It absolutley drives me CRAZY.)
              I can so relate to that........ It sounds like there may be some OCD stuff there but again each child is so different........ talk about with the doc. next time and they may be able to give you some strategies for both of you to work with.

              Take care Jackie (New Zealand)


              • #8
                Re: Need a Connection with Other

                Hi Liz

                I think as parents we often find ourselves second-guessing the decisions we make. I want to assure you that as a mom you know your child better than anyone else. When parents are faced with the decision to use medications or not they need to look at what is best for their child's quality of life.

                Tics present during times of stress and that can be good or bad stress. the fact that your son's tics are more obvious when he is cold is no surprise because I find that with my tics and my sons' tics they often become more of an issue when feeling too hot or too cold. The body being uncomfortable can certainly lead to increased stress or discomfort for the body and potentially cause the tics to increase.

                Do you find your son's tics are more obvious when he is hot or too warm as well?

                TSFC Homepage


                • #9
                  Re: Need a Connection with Other

                  Hi Rlee, Your son sounds very similar to my son who is 7. I have just started him on clonidine.My main concern for him was to help him with behaviours . I so want him to find his spot in the social structure at school. He struggles with it terribly. Jack is also absent minded and I have to repeat instructions many times. Every gym day I have to search for his gymstrip and he looses things constantly.But It is something I just do. I havent noticed that the cold makes the tics worse, I think it might be the meds making tics worse. This seems to be what happens to Jack with almost all medicines. Hang in there