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  • Help Please - Advice on Tics

    Hi all

    Firstly, apologies, because I'm probably repeating so many posts that appear on here, but I think it would help our family greatly if I could 'talk' to someone about our specific circumstance with the hope of some positive or advice. I'm a very scared father who has a 10 years old son who started a blinking into blinking & eye rolling tic about 6 weeks back. It can be near continuous and at times he gets upset because of slight headaches etc. He has described the need to make one of his eyes 'click' and that his eyelids are heavy. We saw a Ped who said it was a tic and it would most likely go. Also, at night, as soon as he is dropping off to sleep and then on occasions throughout the night and when stirring in the morning, his whole body twitches in waves. So his shoulders, back, hip, tum, legs, feet & fingers. The Ped said this was also a tic - we are not so sure??. My question and worry is that if a tic has hold of all these muscle groups in his sleep, is it only a matter of time before the appear in his waken state or is that simply not how tics work?

    Thinking back, we do remember a slight gurning tic he had around the age of 5 that lasted a few weeks but nothing obvious since then.

    Could these still be transient tics? He does not have ADHD or OCD - though he does sometimes have 'sad' mornings - otherwise he is a very big, strong & sporty boy who does well at school.

    Do things like 'tic-tamer' work?

    Everybody keeps telling us to ignore the tics, which we are doing - but at what point does he's distress override the ignoring and we attempt to seek further medical help?

    So sorry but we a very lost and would really appreciate your advice.

    Many thanks for reading
    Brett
    Last edited by Brett; April 24, 2017, 08:17 AM.

  • #2
    Re: Help Please - Advice on Tics

    Welcome to the Forum, Brett and thanks for joining us.

    Apologies are never necessary for posting, because your question is new to you.

    What we know about tic disorders is that about one third of children experience tic episodes during their growing up years, without it developing into anything further.

    Your son's Pediatrician probably made a diagnosis of Provisional Tic Disorder as a "placeholder" diagnosis, to be followed up at some point in the future, to assess the progression of your son's symptoms.

    For a better understanding of the diagnostic process, please see:

    Tourette Syndrome and DSM-5 | Tourette Canada Support Forum
    and
    DSM-5 Diagnostic Criteria For Tourette Disorder | Tourette Canada Support Forum

    While there is no medical diagnostic test like a blood test for Tourette, sometimes the doctor may recommend some medical tests to rule out certain medical conditions that cause tics (Differential Diagnosis)

    We cannot diagnose on the Forum, because that can only be done by a medical specialist with clinical experience with tic disorders with expertise in Tourette Syndrome.

    If you feel you would like to get a second opinion, perhaps from someone with more advanced clinical experience with Tourette, contact the Tourettes Action Helpdesk as they maintain a list of consultants that can help.


    Do things like 'tic-tamer' work?
    The National Tourette advocacy organizations like Tourettes Action, Tourette Canada and the TAA (U.S.) will only recommend medically supported treatments. Tic Tamer is a herbal remedy that has no medical or scientific basis for effectiveness.

    My recommendation is to follow your son's doctor's advice, and seek a second opinion from a Tourette specialist to determine the cause of your son's symptoms.

    We don't know your son's diagnosis at this point, but here are some insights into the dynamics of a Tourette diagnosis:

    Tourette tics, while involuntary are influenced by both internal and external environmental factors. Internal factors would include stress, anxiety, fatigue and excitement while external factors are people, places or situations that exacerbate and maintain tics in a predictable way. The environment does not cause tics, because tics are involuntary, but the environment influences tics.

    According to what is being learned through recent behavioural research in connection with Tourette tic symptoms, Tourette tics, while involuntary are influenced by both internal and external environmental factors. By that is meant the environment inside as well as outside the body.

    Internal factors would include stress, anxiety, fatigue and excitement while external factors are people, places or situations that exacerbate and maintain tics in a predictable way. The environment does not cause tics, because tics are involuntary, but the environment influences tics.

    Although we don't know the cause of your son's tics, you may want to examine what if any changes may have occurred recently in your son's life, to see if any environmental factors may be making his symptoms more frequent / intense.

    we do remember a slight gurning tic he had around the age of 5
    Sorry, but I don't know what gurning means (not a Canadian term...)

    Has the doctor proposed any follow up or possible treatment plan?

    How are other members of the family, or his school reacting to your son's symptoms?

    How is your son reacting to his symptoms?
    Steve
    TouretteLinks Forum

    Comment


    • #3
      Re: Help Please - Advice on Tics

      Hi Brett, thanks for writing. Those of us who participate on the forum here find it comforting to connect with others all around the world. (I'm in the U.S.; Steve, for example, is in Canada.)

      I looked up gurning and found "A gurn or chuck, in British English, is a distorted facial expression, and a verb to describe the action. ... A typical gurn might involve projecting the lower jaw as far forward and up as possible, and covering the upper lip with the lower lip, though there are other possibilities." A tic could certainly look like that. Your description of the wave-like night twitch also sounds like it could be a tic.

      I'm impressed that you knew to be on the look-out for OCD and ADHD. It's true that they can accompany TS. But it's also possible to have just tics.

      Can you tell us more about your son's distress? There are a few different ways I can imagine these experiences might be affecting him, and I don't want to assume too much.

      Tics can be a bit like the elephant in the room that everyone notices but no one wants to name. It can be distressing for the person experiencing tics if no one in his life acknowledges that something rather bizarre is going on!

      I remember, one evening, my son started to cry because of a new tic that was annoying his older brother. He (the younger one) said to me, "I can't help it. It's a tic." In that situation, acknowledgment was the most supportive thing I could do, and I said, "Yes, I understand. I know you can't help it. It's okay. No big deal -- it's just a tic." And then I ignored it as we got ready for bed. But it can be a relief for a child to be given an explanation of what's going on. It can help to explain what's happening, in simple terms, for example, "Sometimes some wires get crossed in a person's brain, and then some weird movements or words or sounds come out. It's called a tic. It's a neurological thing. But even if a person has tics, they're still perfectly normal in many other ways."

      You asked if the tics you've observed might be transient. You raised a good point. The diagnostic criteria for Tourette Syndrome include
      The tics may wax and wane in frequency but have persisted for more than one year since first tic onset.
      So, we'd have to be able to see into the future to be able to say much at this point!

      Different people find different things helpful. Some things that have helped my son (diagnosed with TS at 10, currently 14):
      - regular bedtime
      - learning about tics and tic disorders
      - having a Tourette expert come to school to give a presentation to his peers, and also to train his teachers
      - meeting other children and young people with tics and their families
      - getting some good exercise every day

      But, like I said, everybody is different. Those are just some things that have helped in our case.

      Comment


      • #4
        Re: Help Please - Advice on Tics

        Originally posted by Brett View Post
        So sorry but we a very lost and would really appreciate your advice.
        Brett
        ---------- Post Merged at 06:29 AM ---------- Previous Post was at 06:04 AM ----------

        Hi Brett,
        This is how my son started with tics later to be diagnosed with Tourette's. In Kindergarten he started eye blinking. I brought him to the pediatrician and was told the same thing as you that it was a tic and would go away. My sons body would also twitch in waves as he was falling asleep and before waking up.

        The doctors told me that it was nothing to be concerned about. But now that you say your son does it, it makes me think that possibly there was a connection .

        From kindergarten to 3rd grade he was diagnosed with a transient tic disorder as his tics would come and go. I as well was told he would grow out of it, but he actually grew into it if you will.

        In 4th grade the tics became constant and he added vocal tics to the mix. Which liking back he probably had those all along as well but I didn't know some of the noises he would be making we're actually tics. My son also had OCD and ADHD.

        The best advice I can give you is to love and support your son and find a doctor who is a specialist in this area not just your run of the mill neurologist. Also, may be a meditation or yoga class. Frequently tic's are exacerbated by stress and can cause stress. It is worthwhile to start young with stress management.

        I wish you and your family well,

        Laura
        Last edited by Steve; April 28, 2017, 09:23 AM. Reason: format: duplicate post

        Comment


        • #5
          Re: Help Please - Advice on Tics

          Which liking back he probably had those all along as well but I didn't know some of the noises he would be making we're actually tics.
          That's a really good point. There are sometimes obvious, sometimes subtle things my son does that I don't initially think of in terms of tics -- but then a light bulb goes on in my brain and I'm able to make the connection with TS.

          It is worthwhile to start young with stress management.
          I would love to hear more about this -- how you and your son have worked on stress management, and why you say it can help to start young. We certainly have our challenges with that.

          Comment


          • #6
            Re: Help Please - Advice on Tics

            My son is now 15 now however he has always had a degree of anxiety from the time he was young. His biggest being school. We have done yoga for kids when he was 5 and acupuncture when he was about 13. He also sees a therapist monthly since he was diagnosed. All have helped a little however he still has anxiety and poor frustration tolerance. Now that he is 15 we are about to start CBIT. I feel he's now able to put the work in that is required to gain some kind of control over his Tourette's. at 15 he is very motivated and more aware of his tics thank when he was younger. Hopefully it works. As I said before when he's stressed and anxious his tic's are worse so I am also looking into mindfulness classes. I think this will help a lot with his poor frustration tolerance he has. Wishing I started that earlier

            Comment


            • #7
              Re: Help Please - Advice on Tics

              That is very interesting, Lalber516. Have you probed for OCD at all?

              It sounds like you live in an area where it's possible to do CBIT with expert guidance, without having to drive a long way. Yay!

              Has your son started to figure out which tic(s) he wants to target?

              For my son, the takeaway from your post was the yoga. I'm going to be on the lookout for a class.

              Comment


              • #8
                Re: Help Please - Advice on Tics

                When he was in 4th grade we did exposure response therapy of the OCD as well as medication. He had a thing about germs, although he wouldn't wash his hands obsessively. But if you coughed or sneezed any where with in ear shot of him he would throw his food away. He was also afraid of contamination from flys, so he wouldn't eat outside in the nice weather. He also was a checker he would check for penciled in his bag and constantly check for reassurance that he was being good or he was smart. The therapy combined with medication got him to a good, although not 100% cures, place.

                I think for him the tics he wants to target are the more obvious ones. Such as throat clearing and blowing air out of his nose. His motor tics aren't to bad right now as most of them just look like he's re adjusting himself or his neck is sore.

                I defined agree with your son about the yoga anything that can get him more in tune with his body the better. I sometimes my so will fidgeting so much and his body in constant motion I'll make him sit and close his eyes and do some deep breathing exercises to calm his body down. I'm hoping when he learns to calm his body and his mind his tics will also calm.
                Last edited by aparente001; May 4, 2017, 12:00 AM. Reason: clarified

                Comment


                • #9
                  Re: Help Please - Advice on Tics

                  Originally posted by Lalber516
                  do some deep breathing exercises to calm his body down
                  You may find this thread if interest:

                  Teach Yourself &/or Your Child Relaxation | Tourette Canada Support Forum
                  Steve
                  TouretteLinks Forum

                  Comment


                  • #10
                    Re: Help Please - Advice on Tics

                    Thank you Steve

                    Comment


                    • #11
                      Re: Help Please - Advice on Tics

                      Hey, Steve, I looked at the recommended thread, and followed the links. One site had a directory but no practitioners in my part of New York state, unfortunately. At the other site, I couldn't find a directory of practitioners.

                      Sounds like a nice idea, though.

                      My son's therapist has done a tiny bit of work on slow breathing with him, but I like the idea of seeing someone who specializes in teaching breathing for relaxation.

                      Comment


                      • #12
                        Re: Help Please - Advice on Tics

                        Our 11 year old was refcently on Risperidone and changed to Fluvoxamine (Luvox). That is not the issue here to be brought up but we are not sure what to do. The Luvox is helping and his body weight has come back to somewhat normal...This is also good! Now he is having such bad vocal fluctuations his thorat hurts. He can't talk without his voice going up and letting out little grunts. It got so bad last night he said I can't take it anymore. I took him for a half hour drive at 12am and he didn't go to sleep but settled enought that he lay on the couch and went to sleep. Is there any idea of what can make his voice at least be normal PART of the time! Socially of course it will be a problem too come september.... Not that we worry too much about what other kids think but he will and for his sake would like to see him helped!

                        Comment


                        • #13
                          Re: Help Please - Advice on Tics

                          Originally posted by fear1967 View Post
                          Now he is having such bad vocal fluctuations his thorat hurts.
                          When tics suddenly become more frequent and/or intense, an examination of environmental factors may be warranted.

                          While Tourette tics are neurological and involuntary, the tics are influenced by environmental factors, both internal and external.

                          Examples of internal factors would include anxiety, fatigue, stress, excitement. External factors would include people, places or situations that tend to exacerbate tics in a predictable way. The environment does not cause tics, as Tourette tics are involuntary, but the environment can influence tics, both positively and negatively.

                          There is no universal standard for what factors trigger tics for any given individual, so a therapist would interview and assess each individual's particular tic triggers in order to provide strategies to address those triggers. What might increase tics for one person with Tourette, may not affect another's tics, while the same factor may lessen yet another's tics.

                          Strategies to manage internal factors would include such things as learning relaxation techniques, improvement of sleep hygiene, dietary modifications such as reduction in caffeine and sugars. External factors can be managed by mitigating those situations either by avoiding them, finding ways to lessen their influence through education, awareness etc, or learning ways to lessen their impact.

                          These strategies can be learned with the assistance and counseling of a behavior therapist, especially one who is trained and experienced in treating Tourette Syndrome.

                          Is your son being seen by a Tourette specialist?

                          In what part of Newfoundland are you located, if you care to share that information?
                          Steve
                          TouretteLinks Forum

                          Comment


                          • #14
                            Re: Help Please - Advice on Tics

                            We are 2 hours plus west of St Johns near Clarenville. There are simply not much in the way of resources here. We know of the tourette chapter in St Johns but have only spoke once in regard to the conference a few years ago (which was helpful) btw!

                            Comment


                            • #15
                              Re: Help Please - Advice on Tics

                              Originally posted by fear1967 View Post
                              We are 2 hours plus west of St Johns near Clarenville. There are simply not much in the way of resources here. We know of the tourette chapter in St Johns but have only spoke once in regard to the conference a few years ago (which was helpful) btw!
                              Would you like someone from the St. Johns resource unit to contact you with possible local resource information? I can initiate the contact on your behalf if you wish and send me a Forum Private Message with your contact information.

                              If you send me a Forum PM, I can also provide you with another possible NL resource you might want to investigate.
                              Steve
                              TouretteLinks Forum

                              Comment

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