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Thread: Newbie here with a few questions

  1. #1

    Question Newbie here with a few questions

    Hi all, I am new here.

    I just wanted some advice on a newly diagnosed relative with TS, he is 5 yrs of age. We are new to Tourettes and nobody that we are aware of has had Tourettes or OCD in our family. I have done some research and read about TS but I haven't found the answers to a few questions.


    Firstly if its not hereditary which looks to be the case for both sides of the family could it be possible that a low birth weight and being born premature at 30 weeks be a cause?


    How can I explain Tourettes to older relatives that are quite shocked about the tics? Also, are there any simple videos or info in different languages?


    Although his tics seem relatively mild at the moment, I know this can change. He has one particular thing he does which may or may not be a tic. I am hoping it is part of Tourette's and not another syndrome like maybe OCD. I haven't observed it myself but it involves him rubbing his penis on cushions. He says he can't help it, its something he has to do. Could it be something other than Tourette's? I am also thinking back a year ago before his tics were noticeable, he would say things like he wanted to kill his parents and yes this shocked us all a bit and when they asked him why he said these things, he would tell them that he didn't know why but he kept thinking these bad thoughts. This only lasted about a month and then all was forgotten. Was that also a tic or something else?



    And last of all...is there any good advice you could give me on how to best support the parents whereby one is struggling with mental health issues of their own?


    Any helpful advice would be greatly appreciated.


    Thanks.

  2. #2

    Unhappy TS+ what are the chances?

    When I recently found out a relative of mine (a young boy aged 5) had Tourettes, I couldn't share it with anybody but I finally confided in a friend mainly because I thought she would be sympathetic as she works in mental health. Her reaction shocked me. Basically it was a doomsday reaction like it was the beginning of the end for this poor boy and his family. I felt angry.... at her because... isn't Tourettes just a neurological disorder that involves tics? I did some research and am beginning to realize why she had this reaction but I am not sure as there doesn't seem to be some clear facts. I just couldn't find definite figures. Here is my question.

    What are the chances that this boy will develop other comorbid syndromes along with his TS? Allot of information I am reading seems to say that there is a pretty high chance. Is it 90 percent? Because TS alone we could handle. I know I am jumping ahead here thinking the worst but I am sick to my stomach thinking what his mother has to deal with as she has suffered with depression all her life. I don't know if she can deal with this long term. I need to be strong for her and prepare myself for what we may have to deal with.


    Thanks any info would be great.

  3. #3
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    Default Re: Newbie here with a few questions

    Hello Tara and welcome to the Forum. Than you for joining us and hopefully you might find some answers to your questions here.
    I've taken the liberty of merging both your initial posts into this thread as the topics are inter related.

    thought she would be sympathetic as she works in mental health.
    Obviously your friend is poorly informed and has given you inaccurate advice. It is not uncommon, even for people in healthcare to be inadequately trained and informed about Tourette Syndrome, so you need to filter the sources you consult to ensure they have knowledge and clinical experience in Tourette Syndrome.

    Firstly if its not hereditary which looks to be the case for both sides of the family
    Current evidence suggests that Tourette Syndrome is genetic, although the precise mechanism of transmission has not been clearly established.

    Evidence from twin and family studies suggests that TS is an inherited disorder. Although early family studies suggested an autosomal dominant mode of inheritance (an autosomal dominant disorder is one in which only one copy of the defective gene, inherited from one parent, is necessary to produce the disorder), more recent studies suggest that the pattern of inheritance is much more complex. Although there may be a few genes with substantial effects, it is also possible that many genes with smaller effects and environmental factors may play a role in the development of TS.

    Genetic studies also suggest that some forms of ADHD and OCD are genetically related to TS, but there is less evidence for a genetic relationship between TS and other neurobehavioral problems that commonly co-occur with TS. It is important for families to understand that genetic predisposition may not necessarily result in full-blown TS; instead, it may express itself as a milder tic disorder or as obsessive-compulsive behaviors. It is also possible that the gene-carrying offspring will not develop any TS symptoms.

    The gender of the person also plays an important role in TS gene expression. At-risk males are more likely to have tics and at-risk females are more likely to have obsessive-compulsive symptoms.

    Genetic counseling of individuals with TS should include a full review of all potentially hereditary conditions in the family.
    Source: Tourette Syndrome Fact Sheet, NINDS

    How can I explain Tourettes to older relatives that are quite shocked about the tics?
    Tourette Syndrome is not a death sentence, and most people with Tourette can grow up to become happy productive adults in just about any profession they choose. Intelligence or cognitive skills are not affected, and the expression of tics are completely involuntary and never behavioural, so tic expressions should never be a reason for reprimand and attention should not be drawn to tic expressions.

    Tourette is part of who this person is, just like the color of their hair. The person with Tourette should feel safe among family and friends and the best way to help family and friends is through accurate information. We can provide you with a number of resources for that information by way of local support organizations and resources online that can be shared and printed.

    Has this young man been seen by a physician with experience in treating Tourette Syndrome and its associated disorders? As you may know, people with Tourette are often diagnosed with so called co-morbid disorders which include OCD, ADD, anxiety and depression. Rubbing his penis against the pillow should certainly be investigated to rule out medical or other concerns, but is unlikely to be considered as a tic, but perhaps as a compulsion.

    What support systems are in place for this young man, his family with regard to medical support, school support and family support?
    Last edited by Steve; August 23, 2012 at 10:27 AM. Reason: thread merge

  4. #4

    Default Re: Newbie here with a few questions

    Thank you for your response Steve,

    I do think my friends opinion may be due to a bad experience she had with one of her patients who has Tourettes as well as other psychiatric issues.

    The boy has been seen by a specialist in tics recommended by the school in which he goes to. Although you made an interesting point of whether this specialist also specialises in comorbid conditions. This I don't know for sure but it may be helpful to find someone who is. I will suggest this to the parents.

    He has a small support system, we don't have a big family and in general this family tends to keep to themselves allot. The boy is so far quite happy and funny and popular socially. The parents talked to the teacher about his diagnosis and she hadn't noticed much. The tics aren't that obvious. But she is sympathetic and every so often they talk to the teacher to see if anything else is going on. He is doing fine at school. His focus seems to be fine too.

    I wondered when would be the right time to introduce some kind of counselling to help him cope with him being a bit different. I suppose it is too early right now but it would be good for him to have the tools to help himself. His parents are not drawing much attention to his tics and he calls them his habits. So far he seems ok with it.

  5. #5
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    Default Re: Newbie here with a few questions

    His parents are not drawing much attention to his tics and he calls them his habits.
    I believe the way of characterizing the tics is important for the long term progress a child makes in developing strategies to best deal with his disorder.

    Calling tics "habits" suggests a behavioural component to his expressions which should be avoided because Tourette tics are involuntary whereas behavioural activity lies within the control of the individual.

    From the information you have provided, it seems the problem is of greater concern to family members than it is for the boy, which is often the case.

    Perhaps the family as well as the boy might benefit from looking into a local support group where they would meet other families dealing with Tourette which would give them a better perspective of the disorder and how it might apply to their situation.

  6. #6

    Default Re: Newbie here with a few questions

    I have looked into a local suppport group which is quite far from us. I am on their list for the their next meeting. I will suggest it to the family. I am also thinking it would benefit the grandmother. Thanks for your thoughts, Steve. It is a good point you made about calling the tics habits. I think as he is only 5 yrs old, the parents may have wanted to keep it simple for him to understand right now but it is true they do need to talk to him about it down the track. It will be good for him to meet other kids like himself as well.

  7. #7
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    Default Re: Newbie here with a few questions

    Is there a chance the boy's parents might care to join us here on the Forum? We would be pleased to welcome them and to help answer their concerns.

    They would require their own separate forum registration, not to be confused with yours, of course.

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