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New here - worried that son might have TS (long)

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  • New here - worried that son might have TS (long)


    I'm just wondering if someone can help? I'll give you a bit of history. My six year old son, who has Crohn's Disease started having multiple tics and odd obsessive behaviours last year. After witnessing a very traumatic event they got REALLY bad. At this time he had a major flare of what we now know is Crohn's. He was so sick with CD (Crohn's) that the tics and weird behaviours were sort of put on the back burner. After a few months the started to subside and mostly went away. (The blinking continued but it was quite mild).

    Last week he changed. His daycare, and myself started noticing a change in his behaviour and his tics came back again. He had a major emotional breakdown last week and with that, the tics got worse. He seems to blend them in pretty well with his normal movements, but they are as plain as day to me. Below I will put a list of some of the things we're dealing with and I was hoping someone could tell me if it sounds like it could be TS.

    List of some of his tics:
    • blinking
      shoulder shrugging
      head jerking (or chin to shoulder)
      finger tapping - two times left, then two times right...often repeated)
      touching left hand to jaw, then right hand to jaw - repeated
      tapping feet - usually two times left, two times right - repeated, or sometimes, when walking it is tap tap - walk a couple steps - tap tap
      tongue clicking
      throat noise
      flapping arms like chicken (one side at a time) - or if sitting at table, taps each elbow two times on table - repeated
      tapping hip/groin area each hand twice -repeated often
      head banging (only on soft things like the couch cusions)
      face grimice with sucking noise (one side of mouth strached out to the side)
      touching everything - mostly noticed in the stores. He has to touch everything we walk by. No matter how many times I tell him to stop, it's like he can't stop

    List of some of his odd behaviours:
    • everything has to be "just so" for example his back-pack HAS to face left in his cubby
      gets VERY upset if routine is disrupted
      has explained why his tics happen in two's - he said that it HAS to be done twice, but sometimes it happens three times so he has to do it once more to make it two's again.
      can't handle people not doing things the way they are "supposed" to be done. (ie. kids making up their own way of playing chess gets him really upset because it's not right)
      teachers say he can't sit still unless he is absorbed in something like a puzzle (and then when he sits still he tics), he interupts all the time, seems to have no control over his volume, always has to be in control of everyone and everything.

    Am I off my rocker or does this sound like I should be worried? Our doc is sending us to see someone soon, but I thought someone here might be able to offer some insight. Also, I've heard that there might be a link between auto-immune diseases and TS -anyone else heard this? (CD is an auto-immune disease)


  • #2
    New here - worried that son might have TS (long)

    Hi and Welcome to the TSFC Forum

    You are not off your rocker to be concerned. You know your child best and if you have concerns then you need to investigate. The types of behaviors and tics you are describing are very common among people with TS. People with TS often experience the associated disorders as well (OCD/ADHD). The need for symetry and evens often comes from the symptoms of the OCD. ADHD will cause the high energy and the inability to focus or even cause people to become overfocused and is the reason that there seems to be no impulse control.

    Tics can be simple or complex and if you are dealing with Tourette then they by nature of the syndrome wax and wane which means comes and goes. Typically children when diagnosed are diagnosed between the ages of 6-9. TS is a syndrome so that means that no two people will present exactly alike. There are varying degrees of Tourette Syndrome as well. I have TS and two of my sons have TS. My oldest son is 13 and when he was 8 he was going through a period where he would obsess over everything being even. Just as you described he would do everything in twos and do things an additional time to make things multiple of twos. When he was 8 1/2, I delivered twin boys and I was so glad. I now had 4 children and all boys... no need for a 4th pregnancy, things were even for him

    I understand your concern and I'm glad you found us. TS cannot be diagnosed through any medical testing so if you are referred to someone who is trained in this area or has a good understanding of this disorder you will find they will do a series of tests, they are to rule out other disorders or conditions not diagnose TS

    I can not tell you it is or is not TS but I can suggest that you document all the tics and behaviors you listed in your posting. The more you have documented for your doctor with some specifics around frequency, onset and duration the better. This will be a great resource for when your appointment time arrives.

    Is there anyone in your family with TS?

    To assist you in your understanding Tourette Syndrome, here are the Diagnostic Criteria

    A) Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently.

    B) The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.

    C) The onset is before age 18.

    D) The disturbance is not due to the direct physiological effects of a substance (e.g. stimulants) or a general medical condition (e.g. Huntington's disease or post-viral encephalitis).

    Source for Diagnostic Criteria: Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV - Text Revision), published by the American Psychiatric Association, Washington D.C., 2000, the main diagnostic reference of Mental Health professionals in the United States of America and Canada

    Feel free to ask any questions. There are many wonderful members on line who are very willing to share their experiences. We are here to help and direct you to the resources available.

    TSFC Homepage


    • #3
      New here - worried that son might have TS (long)

      Thank you for the reply and the welcome :D

      No, there is no one in my family with TS, but there is a history of ADD/ADHD and OCB (I've battled with OCB and everyone teases how "they wonder where he gets it from"). Since DS was little he's had a few OCBs. As a wee one he would cry for a cloth to wipe his hands and his highchair tray. He would point to the sink and cry "eeease" (please) until I gave him a cloth. They never interfered with his life or his happiness so we just treated them as his little quirk. But all these tics have me concerned.

      I'm sure I'll have more questions as we go forward with this and I'm super happy to have found this site. It's been interesting reading other posts and thinking "hey - that's just like him!!".

      Thanks again.


      • #4
        New here - worried that son might have TS (long)

        There are several topics under the General section started by parents who share their stories as well. As you post your questions feel free to post it under whichever forum you feel it best supports.

        Visit us often and stay connected because we have lots of new things happening on our BB.

        TSFC Homepage


        • #5
          New here - worried that son might have TS (long)

          HOla! :D It does indeed sound like he may have TS though certainly I'm no doctor and even more certainly no one can give a diagnosis over the internet. but it does sound at this point like the OC behaviors may be more of an issue than the ticcing since he's getting so upset. A book you may find very helpful is _Freeing your child from obsessive compulsive disorder_ by Tamar Chansky.


          • #6
            New here - worried that son might have TS (long)


            Thanks for the suggestion for the book. I'll check out my library today and see if they have it.

            Another question: DS is getting a lot of headaches. Is this common? Maybe he's coming down with something, or maybe his Crohn's is about to flare up, but I was curious if it happens a lot with TS?


            • #7
              New here - worried that son might have TS (long)

              Hi there

              Headaches are common among people with TS. The question is what is triggering it. The headaches can be caused by the tics if it is a head tic, but most people report that the headaches are due to other issues, ie anxiety, sensory issues, etc.

              My son has sleep issues but was losing days and days of scholl last year due to headaches. I had him to our GP and then met with his doctor that deals with his TS and ended up being referred to a ped who through assessment could only attributed then to anxiety/stress. (It turned out that he was stressed over his art class because he loves to draw in black and white but his teacher was teaching them to blend colors... the program was very prescriptive)when the progrm was over his headaches settled.

              I also experience headaches and most of mine start due to lack of sleep, stress or dehydration(I often forget to drink during the run of a day) they get worse due to sensory issues with ordors/noise.

              check out other who have shared in this topic thread

              When does he experience his headaches? How frequent are they?

              TSFC Homepage


              • #8
                New here - worried that son might have TS (long)


                There seems to be no pattern to his head aches. The only thing I've noticed is that they are happening more frequently. He has always been prone to them with any illness, but they seem to be coming on when there is no 'bug' along with it. He is definately coming down with something now, but he's been getting them a lot in the last couple of weeks. On Monday night, he had one so bad that he was either awake or whimpering in his sleep all night.

                A lot of his 'quirks' as we call them, we've never really given much thought to as they seem normal to me because I'm the same way. (Ex: we both have issues with textures in food and fabrics etc, we both like things done a certain way, both of us are bothered by socks, tags drive us nuts, and I even have one 'tic' like thing that I do but it only happens a couple times a day etc etc etc) It's only since all these tics started that I have begun to worry.

                All I can do is wait to see the specialist I guess :? Thanks for the link to the other topics. It's comforting to read them, as no one else I know understand what I'm seeing happen with him.

                Thanks again.


                • #9
                  New here - worried that son might have TS (long)

                  Have you ever noticed if your son crinds his teeth? I just had that thought because I do and never linked it to my headaches while I slept before. My dentist educated me on the impacts of grinding and once I got my bite guard it helped over night. Just clinch your teeth and fewel your temples as you do this. It can cause increased tension while you sleep. I have often woke in the morning with a headache and my teeth hurting and this was why... just a thought !

                  TSFC Homepage


                  • #10
                    New here - worried that son might have TS (long)

                    I've never noticed him grind his teeth, but I'll keep an eye out for that. It have never crossed my mind - but it's a great point. Thanks. Usually when I go in to check on him he's sleeping with his mouth WIDE open and lying in a puddle of drool (ICK).


                    • #11
                      New here - worried that son might have TS (long)


                      It sounds like you are asking all the right questions. It is a good thing you will see a specialist.

                      Wondering though, has your son been using the computer more lately?
                      A particular video game, Game Cube?, PS2 or Xbox?

                      I have found with my son that if he uses any of the above for more then one hour a day he will suffer from headaches during the evening and into the next day. He would begin feeling better late the next day and get back on the game. The cycle would start all over again.

                      We cut all video games and computer time down to 1 hour a day and split these times to late morning & afternoon.
                      TV can be an issue too. We found that flat screens work better for him for both TV's and monitors.
                      I break up his TV time with outside activities or getting him to ride with me in the car while I run.

                      You've come to a great resource of information and experiences. I have found that everyone is supportive. You may want to reach out locally to see if you have a TS group in your area. You can find a list of groups by returning to the home page of this website.

                      With more "tic's" your son may have a rough start this year in school.
                      You may want to go in advance to speak to the principal about your concerns. They can prepare a backup plan for the teacher and advise her/him how to manage.

                      The worse thing is for a child to be corrected for their behavior when they do not have control over it.
                      IF no one understands about TS at his new school. Get them to buy the resource materials available on this website.

                      Please stay in touch through your process and keep us posted.