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Thread: Advice needed on treatment options for a 6 year old girl with motor and vocal tics

  1. #1
    Join Date
    Jan 2012
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    Toronto (GTA)
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    Default Advice needed on treatment options for a 6 year old girl with motor and vocal tics

    My daughter started having tics while in kindergarten. She is in first grade now, and her tics have become very pronounced lately. When she first started having tics we did not want to rush to medicate her. We tried putting her on a special diet that eliminated all sorts of possible food triggers after a doctor had commented on the high level of salicylate containing foods in her diet.

    Although this diet is quite restrictive for her and a lot of work for me, it was worth it if her tics could be eliminated without medication. It seemed to be working for a few months, then she had a couple of colds back to back and her tics increased during that time (she always seems to have more tics when she is sick). The colds have now cleared up and she has continued with this special diet, but her tics have not lessened. We are now beginning to wonder if the reduction in tics that we attributed to diet was actually due to the waxing and waning that can happen with tics.

    So, we are wondering if we are depriving her of eating some of her favorite foods for no reason, and whether we should be starting her on medication. We are reluctant to medicate her because she is only 6 years old, and we have heard that there can be some unpleasant side effects. However, we also have heard that there can be a lot of success with medication. We are worried about stopping the diet and having her tics increase, so she has asked me to wait until spring break when she is out of school for the week to test returning to a normal diet.

    We will be moving from Southern California to Toronto at the end of the school year to be closer to our family, as we are alone here in Southern California. She knows that there are medications available and that they are helpful for some, but that some have side effects from them. She has asked me to research the medications to see if there is one that might help her, and that if we could start her on that medication before she starts second grade at her new school in Toronto.

    I do plan to discuss this with her pediatric neurologist, however we have to wait until March to get in for her second appointment with her. We waited months for her first appointment, and by the time we were able to see her it seemed that my daughters tics were under control with the diet, so we didn't discuss medication. After her tics resumed I made another appointment, but the wait time to get in is quite long. In the meantime, I would like to learn more about the medications available for tics and TS, and their effectiveness versus their side effects. My daughter has both motor and vocal tics.

    Some of her tics include raspberry sounds, letter sounds, echoing other people’s words, kissing the back of her hands (always one hand then the other), chewing her hair, moving her jaw, sticking her fingers in her mouth, and licking her hands. She can, at times, have ADHD-type behaviors, but these seem to be greatly reduced with her special diet. It does seem like her tics are increased when she is having more ADHD-type behavior. However, she is having an increased amount of tics lately even when she is not having any ADHD-type behavior.

    She doesn't seem to have any obvious OCD-type behavior, other than the hand kissing described above. But her 3 year old sister does exhibit a lot of OCD-type behaviors (as does my mother). I also have some of these OCD-type behaviors, although they have not been a hindrance for me. My 3 year old does seem to have less of these behaviors when following this special diet. I am not sure if it is just due to her maturing from a 2 year old to a 3 year old, or if it is in fact the diet.

    But she no longer spends 30 minutes to an hour making her socks or hair perfect. There is no one else in either my husband's family or mine who has tics, but there is a link to OCD-type behavior in my family.

    My mother also has countless phobias. We are not really sure what to do next, and could use some advice from those who have gone through this already.
    Last edited by Steve; January 8, 2012 at 10:18 AM. Reason: reformat for easier reading

  2. #2
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    Default Re: Advice needed on treatment options for a 6 year old girl with motor and vocal tic

    If you are Toronto bound, you should know there are some excellent Tourette medical resources there as well as active support Chapters of TSFC with the head office there as well.

    What does your physician suggest as possible treatment options? Typically OCD behaviour is easier to treat with medications than tic expressions. Medications used to control tics are often abandoned because the side effects make the user feel worse than dealing with tics.

    At six years old, she might be young enough to benefit from cognitive behavioural therapy (CBT) with a therapist experienced in treating Tourette Syndrome. CBT strategies are helpful in teaching ways to recognize the onset of a tic expression and to redirect or temporarily suppress the tic.

    It sounds like you have some important insights into your daughter's situation.

    Is your daughter's tic activity causing any tension around the home with members of the family?

    How do family members react when your daughter needs to express her tics?

    Does your daughter have a safe place in the home where she can express her tics without reservation?

  3. #3
    Join Date
    Jan 2012
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    Toronto (GTA)
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    Default Re: Advice needed on treatment options for a 6 year old girl with motor and vocal tic

    Thank you for your response Steve. We were in Mississauga for the Christmas holidays. We noticed that the head office for TSFC is there, but they were closed for the holiday. We decided to return to the GTA area because we think that having an extended family will be very helpful for both our daughters, especially our daughter with tics. We want to make sure that she has a large social circle of people who she is comfortable being herself around, no matter how bad of a day she is having. She is very sensitive, and this makes going to school very emotional for her on days that her tics are elevated.

    Our neurologist did not describe the different medications to us because when we finally saw her there was no need for medication at that time. She said to call back if her tics returned. We did that, but are still waiting to get in. The neurologist did leave me a voicemail saying that she could prescribe something in the meantime, but I am not comfortable with her being prescribed medication without a further evaluation and without a discussion of the pros and cons of the recommended medication. So we are awaiting our appointment in March.

    I will look into a Cognitive Behavioral Therapist. I did try buying some fashionable necklaces that are made out the same material as a teething necklace. They are designed for school age girls who chew their hair or put things in their mouth. I tried getting my daughter to use these necklaces while at school to minimize any negative comments her classmates may make about her tics (primarily the one that involves licking her hands). But she got very upset with me and refused to use the necklace after the first day she wore it at school. I think a classmate may have said something about it. Perhaps we may have better luck if the therapist works with her with these.

    When she is at home with me and her sister her tics go virtually unnoticed by us, so there is no stress or anxiety then. However, my husband has a very difficult time dealing with her tics. He always overreacts to any health issue, and does not deal well with it. It is not that he is annoyed by or insensitive to her tics. It is more that he is so preoccupied with thoughts of gloom and doom for her future, that he can't relax and enjoy daily life with her. He is especially concerned about future teasing by children at school, as he experienced teasing for being an ethnic minority and for an unrelated health issue that caused him to need crutches and braces on his legs for several years. He says that I do not understand how cruel children can be because I am not an ethnic minority and I did not have any medical issues while growing up. He feels that I am too optimistic about her future, and that I am too complacent about the whole situation. However, I try not to let my concern for her show because I want to ensure that she enjoys life on a daily basis, and that we don't make a stressful home environment for her. He really has a difficult time putting on a poker face and not letting his concern show. He ends up staring at her constantly, as he is constantly analyzing the situation. Then he provides me with an ongoing commentary regarding which tics she is currently having. He does this so she can't hear, but I am concerned one day she will overhear him. She is a very intelligent and perceptive child, and I am concerned that she is going to pick up on his stress. I am also concerned that she will overhear his commentary and mistake his concern for intolerance. So this does create some stress in the house. He is aware of this, and tries his best, but there are many days that he just needs to go out or stay late at work. This is another reason why we are moving, because he wants his absences on these days filled with grandparents. I do find that her tics are increased when he is at home. I am not sure if it is due to his stress or if it is due to the excitement she experiences when they play more rough and tumble games, which she does not play with me. These games increase her hyperactivity, which always results in increased tics.

    Another source of stress in the home is the constant back and forth my husband and I have regarding medication. I am more inclined to wait and see, and not use medication until it seems absolutely necessary. However, he has wanted to medicate for some time now. I do understand his point of view and he also understands mine, so we are not having heated arguments about this. But it does cause some stress. I am concerned about the side effects of the medication, since I am always so sensitive to things (medications, vitamins and herbs, and even several foods). He is not at all sensitive to things (medication, vitamins, or food), so he is not as concerned about side effects. But he is quite worried about teasing from classmates. And I am also worried that my concern about side effects may cause problems if he is right and her classmates do turn out to be as ruthless as he anticipates.

  4. #4
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    Default Re: Advice needed on treatment options for a 6 year old girl with motor and vocal tic

    It is more that he is so preoccupied with thoughts of gloom and doom for her future,
    Most people with Tourette have perfectly normal lives with diverse and satisfying careers along with successful relationships.

    But he is quite worried about teasing from classmates
    This is where you can help by ensuring the school she attends has a policy to deal with children with disorders, and if they do not to assist in providing in service training for her teachers and classmates. Both the Tourette Syndrome Association and Tourette Syndrome Foundation of Canada have programs and tools to provide these services. In fact in Canada, the TSFC has a volunteer program that provides in service presenters from local Chapters or a kit that you can provide to the school. Kits are available from the TSFC office or from the website.

    The key to prevent teasing is education. Your daughter needs a prepared little explanation she can give to anyone who questions her behaviour that you and she can rehearse and roll play so she can be ready to explain her tics are because she has Tourette Syndrome, a disorder in the brain that controls movements and that her movements or sounds are involuntary. Kids might also want to know "they cannot catch it"!!

    Your husband would also benefit from joining you and your daughter at local support group get togethers where each of you can meet and exchange information with peers who also deal with Tourette.

    I am not comfortable with her being prescribed medication without a further evaluation and without a discussion of the pros and cons of the recommended medication. So we are awaiting our appointment in March...................I am more inclined to wait and see, and not use medication until it seems absolutely necessary.
    There should be no rush to medicate, unless after a full evaluation by a competent and experienced practitioner in Tourette Syndrome in children has been completed, options presented to you and seeing the real needs of your daughter.

    In my view, non medication options might be investigated and tried first, and if and only if certain behaviours adversely affect her quality of life, then only those specific behaviours should be treated more aggresively.

    I believe your daughter's quality of life and her ability to function scholastically, socially and creatively should be foremost when considering treatment options and how those treatment options might affect her ability to function at her peak performance.

    Your husband has legitimate concerns about the teasing, but the strategies I've suggested are usually effective in dealing with the problem; by proactively deal with the problem of potential teasing head on, rather than compromise your daughter's ability to function by medicating her.

    Tourette is not a sentence but rather an opportunity for your daughter to learn about challenging new ways to interact with others.

  5. #5
    Join Date
    Jul 2011
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    Default Re: Advice needed on treatment options for a 6 year old girl with motor and vocal tic

    Hi TSMother,

    Welcome to the TSFC Forum.
    I've been catching up on your postings and noticed this line:
    We were in Mississauga for the Christmas holidays. We noticed that the head office for TSFC is there, but they were closed for the holiday.
    I'm also reading with sympathy and understanding your description of your husband's reaction to your daughter's diagnosis.
    Parents often have different reactions. Moms will go out and research the options as you are doing, and dads often just want a quick "fix."
    The TSFC has produced a video that explores these family dynamics and also discusses the effects of medication.
    You might want to take a look at it. It's called Sharing the Experience: Family Life with TS.
    There's a short preview on this page.

    While you may have missed talking to us during the Christmas holidays, please feel free to call us if you have questions.
    We can also provide you with information about the TS clinics in the Toronto area that your doctor can refer you to.
    We're open Monday to Friday 9 am to 5 pm EST.
    1-800-361-3120

    Cheers!
    Tina
    Tina, Forum Moderator, TSFC Staff Liaison

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