Announcement

Collapse
No announcement yet.

really needing guidance

Collapse
X
  • Filter
  • Time
  • Show
Clear All
new posts

  • really needing guidance

    I am new here and truthfully not sure yet what really is going on.
    My daughter is 6 and aprox 2 weeks ago we noticed facial tics.
    At first we thought maybe she was just trying to mimic the facial expressions of the characters on tv, then it was happening when she was having a conversation with you... now we notice it all the time. At least 10-20 times a day.
    She has a lip movement, rapid eye binking, rooling of the eyes and she twitches her eyebrows, i cant quite explain that one..
    I am really scared. We do notice that she is possibly add, yet because we seem to be able to manage it we have yet to get a dx for her.
    See our son 11, has BP, sensory intagration disorder, LD, anixiety disorder, and aspergers(under assesment).
    And really , anything is MILD compared to him. We have always been conserned about the stress that living with our son has affected her with. We have noticed other signs of stress in our daughter and are wondering if this too is stress related?We have noticed that her "emotions " are high at times, Crying and screaming ,and she just takes everything so hard and personal.
    We just went through yet another crisis in our family where her brother had to be brought back to the hosp, could the stress of this bring on these motor tics?
    We do notice a difference in her behavour and even her true personality when the stress is lessened with her brother .
    I am making an appt with her family doc tomorrow, although I almost don't want to (i know a little selfish)
    I am not sure I want to hear that yet another on of my children has challenges.
    I would welcome ANY comments , sugestions or related stories, even some personal guidance would be greatly appreciated....

    Feeling really sad and scared

    Melodie

  • #2
    really needing guidance

    Hey Melodie
    Welcome. My hart really does go out to you. Things must be chaotic. It hurts to know that one of your kids might have challenges especially with your sons history. Im glad ur taking her to the dr, thats a good start and dont worry your not selfish. Just remember that even if she does have TS or anyother challenges its not the end of the world. There was a time when I had to be hospitalized and a time were ppl thought i was just challenged. But hey look at me now lol :D . Keep your head up and we are here to support you. Just do your best, try, dont give up and hope. Best wishes!
    Alley

    Comment


    • #3
      really needing guidance

      Hi Melodie,

      Welcome to the TSFC forum, we are happy to meet you.

      We have support groups for TS all across Canada and to find support resources in your community click Here .

      We have definition of What is TS which might help in understanding more about TS.

      The possibility that there might be something wrong with your child is always stressful and very emotional. Plus, your family is trying to help your son cope with each day which has to be alittle stressful. Let us know how it goes at the doctor and please keep in mind that it might take some time before getting a diagnosis.

      We have articles available and one that is called the Nine Faces of a TS parent and they are very interesting. The article talks about the emotional stages that we go through when hearing about a possibe problem with our child's medical health.

      Don't ever worry about expressing your concerns or feelings on the forum because we are here to listen and to support you and your family.

      Let us know how we can help.

      Comment


      • #4
        really needing guidance

        Hi Melodie,

        I just PM'd you a number for a TS Clinic in Victoria.

        Michelle Collins
        Member Services and Communications Coordinator
        TSFC

        Comment


        • #5
          Thank you all

          Your replies sound very sincere and I really appreciate that at this time.
          I am not really sure what is going on with her, but I am glad that I have this place to ask questions, for this is a whole new challenge for me to learn about....
          the only tics we have noticed so far are motor tics, but we have just started noticing them in the past 2 weeks. Do vocal tics come later? or maybe they wont form at all?
          Her appt is on Fri , It's a start ..

          thank you again so much, I'll be here lots asking many questions!

          Melodie

          Comment


          • #6
            really needing guidance

            Hi Melodie,

            Take it one step at a time. Here is a document called How to help your doctor and it describes ways for a person to ask the right questions of their doctor with their medical needs.

            We have on the forum definitions of tics and more information concerning motor or vocal tics Here .

            We also have many discussion on various tics through out the body and you can jump into any discussion or you can start a new one.

            We are always here for any questions that you may have.

            Comment


            • #7
              Noticed new movements...

              Hi again..

              I read the descriotion of tics and that is exactly what I am seeing with Makenzie. We have yet to hear vocal tics,We have noticed that Makenzie is now doing shoulder and neck movements. We mostly see them(all her tics) when she is in a quiet space , watching tv, being read to, during dinner, at night, after an outing or event,(small and not so noticable ones during an outing) in the van.. the only time we don't notice them is when she is fully ingaged in an activity.
              She definatly has more simple tics most of the time, but the more complex motor tics are really visable at night.
              Is there something besides TS that can cause tics? TS was all I could think of. She is not on any meds or had any recent infections or illnesses..
              It came on so fast and strong. Is that normal??

              Comment


              • #8
                really needing guidance

                Hi Melodie,

                She is not on any meds or had any recent infections or illnesses..
                It came on so fast and strong. Is that normal??
                These are excellent questions and you are very observant of your daughter's tics. You describe very well her movements but we would not want to steer you in the wrong direction therefore, the best thing to do is discuss your concerns with her doctor.

                We want only the best for you and your family and we are here to listen.

                Let us know how it goes on Friday.

                Comment


                • #9
                  really needing guidance

                  Hi IslandMom

                  Welcome to the TSFC forum. I totally can relate to how you are feeling. I have TS plus and I am a mom of 4 boys and my two oldest are diagnosed with TS plus (ADHD/OCD) ... my second oldest (8yo) also has LD and sensory defensiveness. My twin boys (6 yo soon) are both presenting with various symptoms of the TS spectrum... the last thing we want to know is that another one of our children is not normal.

                  You have shared your suspicions of ADD and with the genetic neurologies your son has presented with I would follow through with your daughter's assessment. You asked if the stresses of what was happening with your son could bring on your daughters tics. Tics are triggered by stress (positive or negative) so if your daughter does have TS then any stress could increase the tics. Tics will show differently in everyone. One of my boys tics when excited but not when quiet and settled where as one of my twin boys tends to tic when quiet and settling for the night.

                  Your doctor will need to track family history which I am sure you know from what you have been going through with your son's diagnostic process. The vocal tics present differently for everyone too, my boys tend to have more motor than vocal and over time I tend to have motor tics more frequently than vocal. For a TS diagnosis your daughter needs to have had at least one vocal tic and motor tics over a period of one year... so don't be surprised if the doctor tells you to wait and see. Your daughter is still young and the best thing you can do is what you are doing right now... acknowledging that there may be a concern. The key is to start a journal to track behaviors and concerns you have so you have a running record of tic duration as well as any patterning that starts.

                  Don't fear TS. Yes it is not what we would choose for our kids but many, many people with TS function quite well and are successful in spite of TS. Stay connected with us and remember we are here for you and willing to support you.
                  Janet

                  TSFC Homepage

                  Comment


                  • #10
                    really needing guidance

                    Hi Melodie:

                    Welcome the the TSFC forum and I am glad you found us.

                    Your questions are those that have been asked many times before.

                    Each child's experience with TS is different yet in so many ways the same.
                    It does help to keep a journal and take notes of the times and experiences you have had to relay back to your Doctor.

                    My son has vocal & motor tics, in the case of watching TV or being on the computer or gaming his vocal tics increase.

                    Janet is right about stress. People with TS tend to be more sensitive with stresses around them so they react with vocal or motor tics.
                    Home environment does make a big impact on TS in our case. With added stresses and concerns I've seen a noticeable difference in my son. We have since found the balance we need and it has helped.

                    Some children can tend to tic more at home being the "safe place" then in public too.

                    It is very hard to find the balance between two children with health concerns and finding balance for yourself too.
                    Please take time for yourself and hopefully find some time to do some reading on this forum.
                    Communicating your feelings and venting by writing everything down can help relieve some stresses and relax you.

                    The diagnosis process can take time and you may not get all the answers you are looking for on your first visit.
                    There are tips on this forum about explaining TS to our children and great books available for both children and parents to read.

                    If the Doctor tells you that they suspect TS is a concern, may I suggest you find a way to explain this to your daughter.

                    If she better understands what is happening to her she may reduce her motor tics by relaxing more and not being afraid of what is happening to her. I know in our case it made a big difference in my son.

                    The main thing is to enforce that it is alright to have TS. My son early on thought he did something bad to get it since the motor tics were so uncomfortable. Understanding and reassurance goes a long way.

                    Please keep us posted on your progress and any questions you may have. The search engine above is a wonderful tool to find topics of interest.

                    Take care.
                    PJK

                    Comment


                    • #11
                      Thank you all!!!!

                      Tears well up in my eyes as I read your replies.. Thank you all for your sincere replies..
                      I truly am at the beggining and not even sure what to think .. yet my heart is breaking at the fact that yet another one of my children is going through something I have no control over and can't fix for them!
                      I know,, I am feeling sorry for myself(very selfish). Unfortunatly with all the energy my son takes to keep fighting for what is best for him, I have never really had much time to grieve.
                      I am a little overwhellmed ... thanks for letting me vent
                      Dr appt today ..we'll take it from there..
                      Melodie

                      Comment


                      • #12
                        really needing guidance

                        Melodie,

                        Please do keep us informed of developments following the doctor visit. There are strategies to help people with Tourette deal with everyday life, so continue the discussion to let our Forum members share their experiences with you.

                        It may seem overwhelming now, but as you gain information, you and your family will become empowered with ways to live life to the fullest with Tourette.
                        Steve
                        TouretteLinks Forum

                        Comment


                        • #13
                          really needing guidance

                          Let us know how the appointment goes for you both. I hope it provides some direction and reassurance that is necessary right now.

                          What you are going through right now, most of us have experienced too. This includes all the feelings, tears you have no time to shed and anxiety of what will happen next. The feeling of guilt plays into the process too but is not necessary.

                          It can get better with time and knowledge and be assured you will find some support here and common experiences.

                          This forum did so much for us as a family and helped me be a better mom and advocate for my son. I understand the "no time" feeling and the feeling you can not afford to be exhausted or slow down your quest for answers.

                          You are experiencing a stage that all parents go through with the diagnosis process no matter if the results are TS or not.

                          Please be assured you never did anything to "cause" these medical conditions for your children but you can make a big difference in their lives with your love and understanding and continuing to be an advocate for their well being within the system.

                          TS does not have to be the end of the world and one thing you may notice later as your daughter grows up is that she can become more compassionate to others conditions and concerns because she has TS.

                          We see this in our son despite all the other ups and downs he has had.

                          There are some other responses to these topics of emotions in the parent section.

                          It is OK to vent here and that is how we all learn more and feel better about the future.

                          Take care.
                          PJK

                          Comment


                          • #14
                            an update

                            We went to the Doctors, and she is very supportive. She is starting all the requsitions for all the tests and evaluations.
                            Now, a long list of appointments.. we'll take it from there I suppose.
                            My poor daughter though made a comment when we left the doctors"I thought she was going to make it stop mommy"
                            I let her know that the doctors want to do some tests to see what is going on and that she didn't have to worry , for we were going to find out what to do that is best for her.
                            I cried

                            Comment


                            • #15
                              really needing guidance

                              Melodie,

                              Thanks for sharing what must have been a difficult moment for you and your daughter.

                              It may help your daughter's self confidence and general outlook in learning to deal with her Tourette by meeting other kids with Tourette.

                              You may know the TSFC National Meeting is taking place in Edmonton in mid September, and though it's not across the street, it is in Western Canada if it might be convenient for you.

                              Details are on the TSFC homepage, which can be accessed from the link below the signature of the Forum moderators.

                              Of course you may also wish to contact the Victoria Chapter of TSFC:

                              Victoria Chapter
                              PO Box 48046
                              3575 Douglas Street
                              Victoria, BC V8Z 7H6
                              Phone/Fax: (250) 658-0506
                              email: victoriats@pacificcoast.net
                              Steve
                              TouretteLinks Forum

                              Comment

                              Working...
                              X