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  • #16
    Re: Help

    Just to clarify: The idea to count to 20 was just a test to see early on if my son actually did have tics or if he was just having fun with sounds. When the suppression caused a slew of them, on a few occasions, it was clearer to me and hopefully for you, that this was not being "put on." xx
    Last edited by aparente001; March 3, 2017, 10:42 PM. Reason: fixed typo, clarified that counting is not an intervention

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    • #17
      Re: Help

      Originally posted by ElleEm View Post
      Hi Ty! Just wanted to share our son's vocal tics (doesn't necessarily seem to have motor yet at age 6) all but disappear when I dose him daily with the immune booster Elderberry
      Laura
      Laura,

      Elderberry syrup may be working to help your son's vocal tics at this time, but expectations should be moderated. According to what is known about the mechanism of action of Elderberry, it could be speculated some of your son's vocal tics might be triggered by environmental conditions that affect his breathing and or mucous secretion in his throat or lungs, which is symptomatically soothed by the syrup.

      To my knowledge, and based on available research, there is no medical evidence Elderberry has a definable mechanism of action that would have a beneficial effect on modifying Tourette tics.

      There are numerous anecdotal reports of various therapies that are thought to have benefit, and it would always be wise to consult with the doctor before trying any of them, especially when other medications or even over the counter remedies are being taken, because of the ever present risk of drug/drug and or drug/food interactions.

      Health food and alternative remedies are not regulated by government oversight and quality control varies from manufacturer to manufacturer, so dosage can vary from one production to another, with potential unexpected effects.

      The general consensus about elderberry is:

      Elderberry might affect the immune system. Elderberry seems to have activity against viruses including the flu, and might reduce inflammation. Source WebMD
      Additional information from the University of Maryland Medical Center

      Based on current understanding of Tourette Syndrome, there is no evidence it is an immune disorder, but a neurological disorder thought to be the result of a dysfunction in a very specific part of the brain, namely the CSTC circuit within the basal ganglia region of the brain.
      Steve
      TouretteLinks Forum

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      • #18
        Re: Help

        Hi Steve!
        Thanks for the info! I heard another parent share it seemed to help their child, so I tried it for Dane and 7 months and we realized vocal tics were all but gone until I ran out of it and tics increased. One case study only but interesting :D

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        • #19
          Re: Help

          Originally posted by ElleEm View Post
          Hi Steve!
          Thanks for the info! I heard another parent share it seemed to help their child, so I tried it for Dane and 7 months and we realized vocal tics were all but gone until I ran out of it and tics increased. One case study only but interesting :D
          Not disputing that it did not help your son, as there may be a multitude of factors influencing his experience, including his evolving familiarity with his tic symptoms, his developing self awareness and recognition of the premonitory urges that precede his tics, resulting in his potential to manage his tics while benefiting from the possible soothing properties of the syrup.

          The syrup may actually be helping by providing a vehicle for your son to form his own strategy to better manage his tics, and that is a good thing!

          In medicine, there are few, if any "mystery, magic/ miracle therapies". The effectiveness of any given therapy can and must be explained by a definable and reproducible mechanism of action. So far, that kind of evidence is not available for this compound in connection with Tourette Syndrome.
          Steve
          TouretteLinks Forum

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