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Thread: really needing guidance

  1. #1

    Default 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. #2

    Default 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

  3. #3

    Default 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.

  4. #4

    Default 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

  5. #5

    Default 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

  6. #6

    Default 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.

  7. #7

    Default 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??

  8. #8

    Default 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.

  9. #9
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default 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, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  10. #10
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default 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

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