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  • General questions

    My ten year old son was recently diagnosed with TS (although in hindsight the symptoms were there for years). His TS seems to be mild and no medication was even suggested. His friends and teachers have never commented on his tics and he is doing well in school. I haven't told anyone, other than his immediate family, of the diagnosis.

    I have noticed the type of tics he gets depends on the time of year. Is this common? In the late Spring and throughout most of the summer he has a tongue thrust tic which stops around the time school starts. Then he is basically tic free until Christmas when he starts sniffing and clearing his throat.

    Can tics be allergy related? I have seen a few articles discussing this, however, the doctor I saw dismissed the idea. The doctor basically said yes he has TS and there is really nothing more to do about it -- end of story. I wasn't overly happy with him.

    My other question may seem odd, but how do other parents handle the disrupiton of noisy tics? In the evening when the tics are worse it is nearly impossible to sit in a room with my son and watch TV with him because of the the sniffing sounds every few seconds. I know that probably sounded selfish, but I don't mean it this way -- I understand his problem and am completely sympathetic. Is it okay to point out to him that his tics are becoming more frequent or since he can't control them is it best to ignore them. My husband and I are at odds on this. I tend to just leave the room for a few minutes to switch my focus to something else (without telling my son why). My husband keeps reminding him of the tic and asking him to stop -- which I keep telling my husband he can't. Which approach is right -- ignoring it or reminding him??

    Thanks for any help and insight.

  • #2
    General questions

    LMD,

    Welcome to the TSFC Forum! We're glad you found us and hope we can provide some insights into your family's journey through Tourette.

    Was the diagnosis made by a physician you know to have a good understanding of Tourette Syndrome? Not all physicians have sufficient training or professional interest in the disorder, so you may want to ask some questions.

    Please look through the postings here on the Forum as well as the articles on the TSFC website for additional resource, and feel free to join in any ongoing discussion on the Forum.

    One of the hallmarks of Tourette Syndrome is that the tics wax and wane through time, so today's tic repertoire may not be next Springs repertoire but there may be some that last a lifetime.

    Stress increases tic activity, so if your son is subjected to stressors, he will undoubtedly be more prone to tic.

    Reminding him about his tics, and/or asking him to stop will increase his stress and will exacerbate his tic activity.

    Please remember the disorder causes involuntary tics, meaning the expression of tics is not behavioral. Behavior can be modified, but an involuntary neurological disorder cannot be controlled.

    What do we mean by involuntary?? Hold your breath fifteen minutes...or keep your eyes open for the same length of time....or don't sneeze when a sneeze comes up. Now you know what involuntary means :P :P

    how do other parents handle the disruption of noisy tics? In the evening when the tics are worse it is nearly impossible to sit in a room with my son and watch TV with him because of the the sniffing sounds every few seconds.
    Good question, and my suggestion would be to get your son his own TV in his own room where he can have private space to express his tics without disturbing others. By giving him private space where he can tic to his hearts content will release the energy and will make him more relaxed when he's with the family.

    Your son's Tourette is part of who he is, just like someone who has diabetes, or some other chronic disorder. He needs your help and support so he can deal with his disorder throughout his life with confidence and self respect.

    Have you made contact with any local Tourette support?
    Steve
    TouretteLinks Forum

    Comment


    • #3
      General questions

      I'd like to welcome you to the TSFC forum too.

      What you are describing we have experienced too. At first when my son was younger we thought he had allergies causing his "tics"...

      My son (12yrs) has access to another TV and we do not remind him of his tics. If one of the other children start to say something I am quick to respond. My son always says "thank you" to the fact I looked out for him and just let him tic it out.

      I have on occasion asked him if a show we are watching is bothering him, usually during a commercial. In most cases he will say "yes". I suggest to him to go watch a movie on the other TV or the family steps up right a way and suggests we can find something else to watch.

      When he goes off the watch something else, he has gotten to the point that he asks me if I'd like to join him. I help him pick the movie out and help him set it up, see if he'd like something to snack on. When I am invited to share the movie with him I do. My son is at that stage were he still needs reassurance. I try to provide it.

      Having satellite has its perts.

      We can always watch the show later and my son needs to feel safe and welcome to share family moments.

      In time you will learn to tune it out and maybe even be bothered by others that don't.
      PJK

      Comment


      • #4
        General questions

        Thanks for your info. I knew his tics were involuntary and never made him feel responsible for them. I guess I was trying to find out ways others cope with the tics. He is only ten and wants to be with us in the evening. I couldn't send him to another room and isolated him. I am better able to ignore the sounds than my husband. However, thanks to your website my husband seems to understand more now.

        Our son was diagnosed in the summer (by a pediatric neurologist). I think my husband was in denial about the whole thing. The problem couldn't be fixed by him or a doctor (unlike a broken arm) so he just ignored the situation and hoped it would go away. I have done a lot of research on TS but couldn't convince him to go on-line too. I have been reading your forum for a few weeks now and have printed out some information. I handed the articles to him and said read these. My husband has finally begun to accept and understand TS. It is already helping him cope with our son's TS (sounds selfish on his part when it should be my son learing to cope). However, things are much better now thanks to your forum.

        Our son's TS is very mild and began with the onset of puberty. I have read that between 9 and 13 can be the worse. His TS became noticeable at 9. There have always been some underlying problems with him since he was a baby. Nothing severe, but when I read about some of the associated disorders it all made sense to me. Our son was extremely sensitive to sounds as a baby (we couldn't use any toys that made sound). He shows some mild OCD tendancies. In school his writing skills were always behind as well as his fine-motor skills (he still can't tie his shoes well and struggles with a knife and fork). He is also prone to outbursts at home. None of the problems were very severe and when I spoke to anyone about them they looked at me strangely like I was over-reacting or it was my fault. The school always said he was an excellent student, kind and considerate and helpful. We saw a different side of him at home. The only concern the school ever had was the writing. One teacher said she couldn't figure out what was wrong with him but there was something there. His grades were too high to have him tested for any learning disability.

        But now it all seems to make sense and fall into place. I feel relieved that what I saw in him was something concrete and not bad parenting. I can now help him cope with the challenges he faces. Thank you again for this forum.

        I hope his TS stays mild and manageable for him. Will it get worse over time especially when puberty hits full force? Is it likely to subside (but not go away) as an adult?

        Thanks

        Comment


        • #5
          General questions

          He is only ten and wants to be with us in the evening. I couldn't send him to another room and isolated him
          This is not the intention. The idea is to provide your son a parachute so if he feels tense and needs to release his tics, he knows of a safe place where he can go, let off the steam and come back.

          The need to tic can be best described as a build up of energy that needs to be released..like a sneeze. Sometimes a person with Tourette is capable of delaying or suppressing the tics for a while, while others re direct their tics to a less noticeable place like wiggling toes (out of sight).

          But, eventually the tic energy has to be released. For people at work, they may go into a stairwell or into a washroom and release their tics. At home a child's bedroom can be their safe place.

          I might suggest that your husband not need to feel any guilt for your son's Tourette because neither of you did anything wrong. This is a genetic disorder that's passed along from generation to generation.

          It's not uncommon for a parent to feel uncomfortable when first learning about Tourette, which is why it helps to communicate with others with the disorder either at a local support group or on a responsible venue like this one.

          The prognosis varies from person to person so it would be misleading to say it will subside, but in some cases it does.

          The best strategy is to equip your son with the tools he will need to confidently go through a normal life with his disorder.

          The most important thingsfor him right now are to know Mom and Dad support him, that he knows he isn't doing something bad and to know what to say to people who need to know about his Tourette.

          You may wish to print this for his information.
          Steve
          TouretteLinks Forum

          Comment


          • #6
            General questions

            Yes, I think I know what you mean by parachute. I believe for him our home is his parachute. He loves to be home with us. He recognizes when he needs his space. Not necessarily for releasing his tics but just time at home alone. He often asks me to find a nice way to send his friends home after a few hours so he can just play by himself. He often calls us early from a friend's home to pick him up -- not because he is having a bad time just he wants to be home. He enjoys the company of his friends but needs his alone time. I'm glad he is so comfortable with his family. I hope this continues for him. He will be starting a new school for Grade 7 soon and then after that High School so the stresses will increase for him. I hope when he becomes a teenager his home and family will still be as important to him (although I remember myself as a teenager!!). I think over the years, even without a proper diagnosis, we have found ways to manage his stresses without knowing that's what we were doing.

            Thanks again

            Comment


            • #7
              General questions

              The response your husband is having is common and getting him involved with postings from the forum is a positive way to help him become more comfortable.

              I have had my husband read posts on this forum to educate him and help him relate. Sometimes reprogramming family members is a step you must take to get all the support you need in the future.

              It is not uncommon for children with TS to have good grades or even above average gifts.
              We too have dealt with writing skills but aimed my son toward a computer instead of requiring him to write everything out by hand.

              I realize in his grade most reports are hand written but you may see him blossom into a writer if you introduce a key board to him.
              It helped my son's self-esteem concerns and gave him a way to express himself.


              Have you tried to find a local TS chapter. The meetings tend to be once a month in most areas and most chapters have a contact that you can reach any other time. You can find additional support through your community this way and will find others like you learning and managing.

              It helps to share in meetings like these and build your local support group just like visiting here to express feelings and ask questions or relate concerns.

              I hope you and your husband know that you will receive support here by visiting this forum and that any question or concern can be asked.
              PJK

              Comment


              • #8
                General questions

                Hola! :D Welcome to the boards!

                You asked about TS and allergies. I think what it is, is that anything that adds stress to the body-- allergies, illness, mental stress, fatigue, etc.-- can cause an increase in ticcing. So, it's not the allergies per se, but the added stress.

                I also agree that reminding him of his tics is not the way to go. It's likely to make your son feel unacceptable to his father. I don't see any positives coming out of it at all.

                Comment


                • #9
                  General questions

                  I posted this in another thread but thought that maybe one of you could answer this question for me:

                  If a child dabbles with OCD and anxiety here and there (it's happened 3 times in the past 3 years), has no signs of ADD or ADHD but has pretty much constant tics (since he was 3 years), is it really TS? I am without a doubt sure he had OCD this past summer. He went from "Bad Disturbing Thoughts" to counting every step, everything to nothing. I would think that OCD or anxiety would be the way they are wired not a short term thing, this makes me confused. I wonder if it will return,... I wondered if he just had a tic disorder until the OCD and anxiety came but now I'm back to thinking maybe it's just a tic disorder again, but he has so many and they can get quite complex?!? It's just not very clear to me. :?

                  Comment

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