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  • Our doc appt...

    ??? I recently brought Makenzie to the ped. due to her tics(all motor right now, no vocal) and he (well his intern) shruged it off as nothing to worry about, even suggested we cancel the EEG ordered by her GP.
    He agreed that they are tourette type tics, but just teach her to live with them.
    I have even noticed (due to a another crisis in our home) that she is having more full upper body movements.
    I am going to re book an appt with the reg PED> when he returns from holidays for It really felt shrugged off
    We even have history of nervous system and nurological based illness in our family(no ts) but my son has differnt disabilities.
    She is clearly showing signs of add type behaviour and well these tics are not stopping! (if that is what he thought would happen!!)

    a little frusterated and well my daughter is now feeling a little overwhelmed with these tics..
    We have explained it to her the best we can, she is very aware that everybodys brain works different and that due to stress or fatique all our bodies react different... she understands the best she can.

    :-\ Mel

  • #2
    Re: Our doc appt...


    Follow your instincts because you know your child best. re-book the appointment and try to secure the EEG as planned, keep in mind the EEG may show nothing but if you are dealing with TS then there is no test but it is easier to get an true TS DX when everything else is ruled out and that is the benefit of these types of tests.

    TSFC Homepage


    • #3
      Re: Our doc appt...


      I agree with Janet.

      May I also suggest since you left feeling bad from your experience that you contact the ped and report your experience. Interns have to learn bedside manner and the one you spoke too may have little knowledge of TS or treatment options in his studies.
      It may help you feel better about what happened and possibly help another parent in the future when working with the intern.

      I am glad you shared your experience and don't worry unfortunately experiences like this can happen.

      IN connection to the crisis you mentioned, is your daughter of age to understand briefly why life is not settled right now?
      Sometimes children are like sponges with or without disorders and can find blame in themselves for the cause of the trouble without us even realizing it.
      I've seen the motor tics increase with my son over stresses in the home or even experiences others have had close to us, once he understands they are being managed or not directly related to him it seems to get better for him and he can cope.
      Just a suggestion that might help.

      Take care.


      • #4
        Re: Our doc appt...

        In regards to our family crisis and our daughters ability to understand... our daughter is 6 1/2 , and actully able to understand more than she really should!. We also have a son with bipolar disorder, sensory intagration disorder, ld, and falls in the midly mentaly hadicap range... She is reasured daily that these things are NOT her fault, and that she is in no way to blame.He is in hosp and waiting to be placed in a respite special needs foster home. She is missing him dearly..
        We try to raise our children to understand that everybodys brain works different and we all need different care and or special treatment. But our differences is what makes us special, and that we all have the same beating heart!
        We have reasured her that she will not have to have the same care (ie: hosp incare or will she have to go to a foster home ) because of her "differences".
        Of course I as a parent can only hope that she really understands....
        As for the DR visit, I am going to make a new appointment for her soon, and do plan on going ahead with the EEG, just to rule out anything else..

        One new question, ?? can vocal tics happen when they are sleeping? I have yet to hear anything during the day, but she has been in our bed the past few nights and I have noticed that during her sleep she makes a loud, hard gulping sound... Is that a tic?????



        • #5
          Re: Our doc appt...

          Hi there

          I know my kids have motor tics while sleeping. My oldest has had a complex head tic for years and he often sits up in his sleep to swing his head in the same motion that he does when awake. I have heard my kids also make grunting and growling noises as they have drifted off to sleep so I would from personal experience say yes, tics happen in their sleep. My only concern is that if the noises are sounds that could be connected to their breathing or partial airway obstruction I would get it checked. I say this based on a very informative presentation by Dr. Stephens at the most recent TSFC conference. She shared that many parents are so relieved that their kids finally fall asleep that they don't often stick around to watch them in their sleep and sometimes there are sleep disorders coming into play that we often miss. Such things that can be red flags that you may want to watch for are: nightly scoring, snorts, gasps, repeated head movement, mouth always open, noisy breathing, sweaty throughout the night.

          TSFC Homepage


          • #6
            Re: Our doc appt...


            Janet is correct in suggesting you get a professional opinion on this sound. My own son has had a deep gulping sound when awake and usually surfaces under stress or anxiety. Having this happen while sleeping may not be a tic or could effect the ability to breath properly.

            Makenzie maybe under some emotional stress living through the process for your son and missing him so much. She may need to release some of this stress while sleeping but I would not put off seeking medical support on this topic.
            Has any of her med's been changed in the last few weeks? If so, this could be related so bounce if off the attending physician.

            You obviously have been a very loving and supportive mother through this process and reassuring Makenzie that she and her brothers needs are different is a positive move. Sometimes children think the same thing can happen to them or they will be like someone they know. They also blame themselves for anything around them that happens and it takes consistent support to assure them.

            My heart goes out to you and the decision you have made to find consistent daily care for your son. It must have been a very difficult one. We have a resident facility close by that provides medical care, housing and even schooling for children with special needs. My son's first assessment was done there in the medical office. Often it is also a great place for children while medications are being balanced and parents are being taught how to meet their needs. When things were at their worst for us it had been considered.
            Hopefully you have been able to take a tour of the facility that is being considered. This experience may be able to offer some more positive information you can later share with Makenzie to assure her it will be alright.

            Please keep us posted and I am glad you shared. This is a safe and supportive place to be.

            Take care



            • #7
              Re: Our doc appt...

              Its been awhile since i loged on .. so a quick update on Makenzie ..
              as of this date, no vocal tics are noticed during her waking hours , yet that gulping sounds is still present during sleep.
              her eye rolling. brow raising and shoulder shrugging are still consistant, but the facial mouth tic and the full facial grimmace have not been noticed latley.Do certain tics come and go? Do new ones take thier place?
              She has developed this full body movement? this one seems to be very difficult for her to manage and she does state that it really bothers her.So we have her now doing deep breathing and even have her following some of the OT therapy that we have done with her brother.
              The stress in our house is high again, back to school, and her brother is home with full time in home support workers.So Makenzie has to face all these different people comming in to solely dwell on her brother! And his home comming has not been to positive or comfoting to her. He is often negitive or violent with her.She is also aware that he will soon be going into full time residence so again, more change and he is gone again!
              We have her refferd to child and youth mental health, for theraplay sessions. Hopefull this will able her to better understand some of the very complex situations that her brother has and brings to our family.

              I will say though .. today her brother has been gone all day and now into the night.. and her tics are minimal!
              It is nice to see her in a calm place!



              • #8
                Re: Our doc appt...

                Thank you for the update!

                Do certain tics come and go? Do new ones take thier place?
                A hallmark of Tourette is that tics wax and wane over time, sometimes seasonally sometimes longer. Also the repertoire of tics changes, so, yes new ones come while others seem to lose favor.

                There does not seem to be a way to predict these changes and tics do not appear to be copied. This fallacy is one believed by some parents who are concerned about allowing their child to meet other children with Tourette. There is no evidence to suppport that concept.

                We have her refferd to child and youth mental health, for theraplay sessions
                This is a positive development. You may wish to discreetly have a private conversation with the therapist to confirm s/he has an understanding of Tourette Syndrome. Though many health professionals have a passing understanding of the disorder, not all have clinical experience with it to fully appreciate its complexity.

                You may wish to print off a copy of this document What is Tourette Syndrome as a resource piece and if the therapist want a preofessional document, s/he can contact the TSFC National Office (800) 361-3120 for a copy of the Clinician's Guide to Tourette Syndrome Of course s/he would be most welcome to join us here on the Forum as well.
                TouretteLinks Forum


                • #9
                  Re: Our doc appt...


                  Thanks for the update.

                  Tics do come and go. It seems like others replace some but it is a cycle that can happen only individually. There is no ground rule of what to expect next unfortunately.

                  In our case some have only lasted a week while others can last months. The motor tics or body tics you mentioned can be hard for child to cope with as they are obviously not being controlled by them.

                  Have you tried to explain more about TS to your daughter since your last visit? If she understands that her brain is making this tic happen and that it is alright since others can experience this too she may feel better about the experience in the long run. In our case with my son the motor tics became less severe or painful once he understood it was alright and not his fault.
                  At a young age it is hard to explain or understand but bits of information can help ease the stress.

                  There are a number of good books on the market you can share with her that might ease her stresses.

                  Please keep us posted.


                  • #10
                    Re: Our doc appt...

                    Hi.. I am going to set up another apt with the ped, but in the mean time... if no voacl tics develop is it really touretts? or can in just be some other type of tic disorder??/ is there another?... some stuff i have read on touretts here has been very informative, yet not all applies!but again ... alot does!!!
                    She is very good at talking about it now, and does understand (as well as she can) that it is not her faullt..
                    her comment today.. "why don't I have them at school..well I have the eye ones , just not the others?"
                    From what I read , they can seem or appear "less frequently" in these places, correct??
                    For me. they have just become part of the norm, not so alarming now... so much to learn still!
                    thanks everyone!



                    • #11
                      Re: Our doc appt...

                      Hi Melodie:

                      To meet the diagnostic criteria for Tourette, there needs to be at least one vocal tic present.

                      There are other tic disorders that include motor tics only with no vocal tics. Also vocal tics can be present but be very minor in nature. For example, sniffing, or throat clearing. A child could have these and they could go unnoticed -- especially if they are not experiencing the vocal tics all day long. Other vocal tics that could go unnoticed are small noises such as humming, repeating letters or other sounds. These could be done very quietly and be missed. However, I suspect that if you are working with your pediatrician to find a diagnosis that you are watching for anything/everything.

                      For more information on other tic disorders see this posting.

                      One way to view tic disorders is like a scale. At the low end of the scale are transient tics. These are tics that appear for a few weeks or months in childhood and then disappear. Along the scale you would find chronic motor tics and chronic vocal tics. At the top end of the scale there is Tourette Syndrome (TS). Even TS has varying degrees -- some people have only a few tics that are not of much concern to them, others have major tics that affect every aspect of their lives.

                      When you say that not everything applies -- this is the norm for TS. No two cases of TS are alike. Not everyone gets the same tics and the progression from onset is not going to be the same from one person to another. Also the associated disorders (ADHD, OCD, etc.) can complicate this even further.

                      they [the tics] can seem or appear "less frequently" in these places, correct??
                      This is correct. Many children don't tic at school or in other public places. Some do this sub-consciously and others choose to suppress their tics because they don't like the reactions they get from other children.

                      Feel free to keep asking questions. There are lots of people here willing to share their experiences and answer your questions. Let us know what is happening
                      Forum Moderator


                      • #12
                        Re: Our doc appt...


                        School is not always a place the tics happen. Some of our children can suppress them until they come home while others tic more at school then home. It is a toss up.

                        Tics do come and go and you don't have to have a constant tic to have TS. There are different levels, some TS can be considered mild while others are considered complex.

                        I am glad you have the appointment and suggest to follow through. Keep a journal until then to track behavior and any tic you may see. This helps the physician determine how to help you. Look for any triggers, stresses or upsets, even lack of sleep from the night before. All these factors can effect an individual with TS.

                        I am sure you will have a clearer picture once you get through the process.

                        Thanks for keeping us posted and feel free to ask any questions here.

                        Take care.


                        • #13
                          Re: Our doc appt...

                          Some kids (my son included) do suppress or modify their tics to less noticeable ones very well at school. I think my son is embarrassed and also used to getting into trouble for some of his tics so he now suppresses when he can.

                          I notice when he comes home it is almost like 10 kids have just walked in my door and for about 20 minutes there is a flurry of activity (tics) and then he settles down.

                          The fact that he is good at suppressing can be problematic as the school (a) sometimes thinks he has no tics at all or (b) thinks he should be able to control them ALL OF THE TIME which of course he can not do.

                          We had a psych nurse start to get involved with his school last year (at our request) and since she is trained to spot tics she came up with a whole list that the teachers never did see and still don't. Many of them I had no idea about as he only does them at school.

                          TS/OCD is very complicated and over the years I have learned to stop trying to rationalize everything and just accept it for what it is and fully embrace the information I am given by his doctors as well as my own research. Especially the OCD piece as it is not rational and does not make sense and no amount of trying to make it so.

                          eg: my son is very upset by things he perceives as contanimated and does not tolerate well being in places that are messy however his room is a nightmare! lol... As well he can not accept it when others do not follow rules however he doesn't always have to follow them. lol

                          Sometimes I find a sense of humour about all of this works wonders. The school may not be laughing but I have to look at the funny side (after my son is in bed of course) or else I think I would be very very sad.