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    Hello everyone. My son is 8 years old and in March he was officially diagnosed with tourettes syndrome. I've been suspicious of something for some time now. I think I really started to notice when he was in grade one. He has had the head jerk since then and that is what I noticed first. Recently he started with the head shakes and noises with his mouth. He also puts out his middles fingers a lot but not right up in the open. He is definitely not contious that he is doing this.

    We visited with the pediatrician and she reluctantly put him on clonidine. She did this only because he was becoming self contious. In may I explained to her that the tics are still present but not as severe. We increased his meds a little. Now he is winking a lot and scrunching his face. We also went through the shuffle when walking and the tongue clucking as well as snapping his fingers. I've read that all these are common symptoms. Is this happening to any one else's child?

    I'm going to see the doctor again tomorrow. She asked me to look up on the internet the stats on Risperadol (although I don't think she is too keen on the meds.) She wants me to let her know if I feel comfortable trying it with my son. I don't think I will. I don't like what I've read so far. Am I right?

    I'm so glad I found this web site. It's nice to get some advice from other parents who are going through this as well.

    Hope to hear from some one soon.
    Catia67

  • #2
    Re: Hello

    Welcome to the forums! You're right... you've certainly come to the right place. ;)

    I'm not a parent, but my younger brother and I both have Tourette's.

    Originally posted by catia67
    We visited with the pediatrician and she reluctantly put him on clonidine.
    I'm on clonidine now... it doesn't seem to do a whole lot to help me; it makes me sleepy though. I may not be taking it for much longer. But it's different for everyone.

    Originally posted by catia67
    Now he is winking a lot and scrunching his face. We also went through the shuffle when walking and the tongue clucking as well as snapping his fingers. I've read that all these are common symptoms. Is this happening to any one else's child?
    All common tics. I blink excessively, as does my brother (I think that, along with shoulder shrugging, it's one of the most common tics.)


    Originally posted by catia67
    She asked me to look up on the internet the stats on Risperadol (although I don't think she is too keen on the meds.) She wants me to let her know if I feel comfortable trying it with my son. I don't think I will. I don't like what I've read so far. Am I right?
    Unfortunately, there's no "right". Medication is different for everyone -- the side effects may be more severe for some people, while almost non-existant for others.

    It's important to decide how much the tics affect your son's life. It'll get easier as he grows older and can start making these decisions for himself, and decide whether or not he's comfortable with medication. Until then, you need to think about what's best for your son.

    Finding the right medication for something like Tourette's can often involve a few trials. It's important that the "cure's not worse than the disease" -- that is, if there are side effects, make sure they're not a greater obstacle than the TS itself.

    I know that sounds scary, but it's important to be careful with medication. Do as much research as you can -- and be careful about taking advice from the Web. Not every online source is credible. I'm not a doctor, for example, so I can only offer you details of my own experiences -- not medical advice.

    Starting with a low-risk medication, like clonidine, is a wise move. If a low-risk substance can help the symptoms with few side-effects, then that's preferable. If it doesn't work, then it's time to decide whether to move on to something new, or not. If you're afraid of the risks, and your son isn't held back by his TS, it might be worth waiting until he's a little older. By then, he'll be further along his own development, and he'll also be more aware of his situation, and have a better idea of what he wants.
    Colin

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    • #3
      thank you

      Thank you for the feed back Cailean.

      At what age were you diagnosed? My husband thinks he may have had Tourettes as a child although he has no symptons today at age 51. Back then he was dismissed by his parents as an attention grabber. My husband is a very inhibited person. I wonder if TS had something to do with that and how he was treated as a child with TS?

      Again thank you for the advice.

      Comment


      • #4
        Hello

        Catia,

        Welcome to the TSFC Forum. You have come to the right place for information on TS.

        To assist you in obtaining information on the various medications in use for treating TS, have a look in the Message Section on Treatment Options.

        Select the postings dealing with the meds you wish to research including clonidine and risperdol. You will notice some of the message threads contain links to the manufacturers sites for specific information on these medications.

        Once you have looked through these, feel free to post additional questions or comments on the topics in question.

        As Cailean suggests finding the medication that works for your son may require some trial and error because not everyone's body chemistry responds the same way to each medication.

        In the final analysis, the choice of whether to medicate or not comes down to how TS affects your son's quality of life and the choice of medication is based on benefits vs risks or inconveniences caused by the medication.

        In addition to consulting with a physician having professional interest in TS, make use of local support for TS if available in your area as well as our online support community.

        Check out this page to see if local support services are available in your area.

        Glad you found us and let us know how we can help.

        Regards,
        Steve
        TouretteLinks Forum

        Comment


        • #5
          Re: thank you

          Originally posted by catia67
          At what age were you diagnosed?
          I haven't been... but it's pretty clear that I have it (my parents and my family doctor agree). I've had tics my whole life, but they've actually been getting more noticable and harder to supress over the past year, so I'm going in for diagnosis in August. I'm 21. My brother was diagnosed with it at age 7 (he's now 12), and my symptoms are like a 'watered down' version of his.

          Originally posted by catia67
          My husband thinks he may have had Tourettes as a child although he has no symptons today at age 51.
          It's not uncommon for Tourette's to go undiagnosed when it's symptoms are minor, or brief, or when the person who has it doesn't want to go see a doctor about it.

          Originally posted by catia67
          Back then he was dismissed by his parents as an attention grabber. My husband is a very inhibited person. I wonder if TS had something to do with that and how he was treated as a child with TS?
          Perhaps. As we all know, Tourette's is neurological. But we can't forget that there are some significant psychological factors involved when dealing with the syndrome. Living with the symptoms of TS can be a challenge, especially when those around you don't understand. It's not uncommon for this to lead to frustration, low self-esteem or antisocial behavior.
          Colin

          Comment


          • #6
            Hello

            For additional information and insights into risperdal, see this Forum posting
            Steve
            TouretteLinks Forum

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