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Thread: I Passed It onto My Son :(

  1. #1
    Join Date
    Jul 2015
    Location
    Milton
    Age
    40
    Posts
    4

    Exclamation I Passed It onto My Son :(

    Hi Everyone

    I'm 38 years old and live in Milton Ontario. I've had TS all my Life from the age of 5. Going throw life with this was a huge challenge, I had some friends, but most of the time I was and felt like a misfit. I kept to myself a lot going through life as my social skills were lacking (Trying to have a conversation and suppress TS don't go hand in hand very well). I was always mentally and physically exhausted all the time as I tried so hard to suppress it at school and let loose when i got home.(God bless my poor parents putting up with me) Just to put the cherry on the top I also had bad asthma and eczema. So playing team based sport games was mostly out of the question. During the middle of highschool I started hanging out with the wrong kids, and started doing drugs. I've been Reading up on TS now they say that about 55% of kids with TS will outgrow it. I'm not sure if I started out growing it or if the Marijuana put a halt to it. I'm kinda leaning towards the pot because as soon as I started smoking it was almost 100% completely gone. (I've been reading and hearing that Marijuana has been known to halt TS due to the fact that it's works as a muscle relaxer) But I don't know for sure if that's what stopped it or if I grew out of it, but what ever it was it became dormant.

    Flash forward many years and I'm now an Information Technology Analyst, married to a wonderful wife and have two amazing kids. I quit drugs many years ago, but have noticed that the TS has slowly creeped back again. Nothing extreme and anything I cant handle. I notice it gets abit worse when i'm overly active, but other then that I rarely think about it.

    Now for the hard part.............My wife and I just noticed that my soon to be 4 year old son has it. I don't cry often (Probably because I grew a thick skin because of TS), but last night I broke down. I noticed he was starting to blink a few times here and there but the other day he was super tired and he was blinking A LOT! He even told my wife that he cant stop blinking and he doesn't know why. I'm also seeing the other TS traits that he is doing. To know that I've passed this onto my son has devastated me and I feel extremely guilty for it. I know how hard life was with it and I never wanted him to go through what I went through. Now I'll find out first hand what my parents had to go through. I remember all the things that they did for me and I thank them for that. They went head over heels and tried every support they could get for me, but at that time TS was just a Blink of an eye (Pun Intended).

    How do you tell your son he has TS because of me?!? What will he think of me down the road!?! I'm just beside myself now.....Sure I can tell him that famous people have it or that your dad is fine and living a good life with a great job and so will you, but in the end...... I gave him this. Is there any other parents out there that are in the same boat? Just to know that I'm not alone even.

    I've been researching more and more about it now that my son has it. I've noticed a new thing that I never had when I had and it, it's CBIT therapy? Does anyone have any information on it? Videos? Areas in Ontario that do this? Also is there anyone in Milton that has TS or their kids? Maybe we can meet up sometime? I want my son to know that he is not alone and many others have this as well. If I can get him friends right away with other like him that might help him down the road.

    Thank you

    A Concerned father

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,944

    Default Re: I Passed It onto My Son :(

    Welcome to the Forum and thanks for joining us!

    I'd like to address the very pertinent questions you have asked, but am currently traveling and am unable to respond to the extent necessary.

    FYI I will be giving a comprehensive overview on CBIT at the Tourette Canada National Conference in Niagara Falls in October, if you will be there. If not I can provide you with all the you might want here on The Forum.

    It's not unusual for a parent to feel guilt when their son or daughter expresses tics, and the parent happens to have Tourette themselves, but I can assure you there are good reasons to allay your feelings of guilt.

    Lets continue our discussion in a couple of days when I get back....in the meantime perhaps other Forum members can offer their insights.

  3. #3
    Join Date
    Jul 2015
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    Milton
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    Default Re: I Passed It onto My Son :(

    Thank you Steve, looking forward to hearing from you.

  4. #4
    Join Date
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    Default Re: I Passed It onto My Son :(

    TnT,

    Thanks for your patience and understanding in waiting for a response.

    You've brought up a number of very important issues that I would like the opportunity to discuss and explore in the coming days.

    It sounds like you had some struggles in your own formative years, perhaps in part due to a lack of general awareness about your symptoms and about Tourette among family, school and in some part, segments of the medical community.

    Awareness and understanding has come a long way in the last couple of decades, and there is still a way to go, but I believe our understanding of the disorder is better now, giving us more tools at our disposal to assist anyone who may be having symptoms.

    I'd like to address your question about the possible role of marijuana and Tourette symptoms with the study reported in this post.

    I would follow up by saying the usual course of Tourette among children follows the rule of thirds:

    • One third experience complete remission by the time they reach adulthood
    • One third experience significant reduction in tic activity
    • One third stabilize, usually, without worsening



    In the group whose tics remain lifelong, a significant number develop behavioural strategies to manage their tic symptoms, a topic I'll get back to later.

    Specialists in tic disorders tell us that about one out of four kids experience tics during their growing up years, that don't develop into anything at all.

    It sounds like a major source of your own distress is a sense of guilt for being directly responsible for what seems to be the emergence of tic in your son.

    If the genetic component were that simple, researchers would probably have had an much easier time identifying the gene responsible for TS! The reality is that the genetics of TS is much more complex and no one individual parent can be held "responsible" for passing it on.

    I would urge you to read the book, published by the Tourette Association (U.S.) which, in my view is one of the most comprehensive outlines of Tourette, dedicated to parents living with TS in the family. It's called a Family's Guide to Tourette Syndrome and can be purchased inexpensively as a Kindle book Information HERE

    For your convenience, I have made available the Chapter on Genetics from this book that you can read HERE. I think you will find the rest of the book equally informative.

    How do you tell your son he has TS because of me?!?
    First, it doesn't sound like there is a definitive diagnosis, so we can't be certain. Your son is four, and there is a long way to go before anyone can know for sure. He is so young, that his sense of self awareness is far from matured (usually by 10 to 12) so whatever is going on is involuntary, and should not be interfered with. You may want to alert his pediatrician about your concerns, to document his symptoms, so the doctor can keep an eye on things and follow up later.

    Tics are not a bad in themselves. Tics are not life threatening, and as you well know, tics do not affect a person's intelligence, personality, skills or potential. Tics are part of who we are, just like the color of our hair or whether one is short or tall.

    This is not to minimize the importance of your concerns, but rather to try to add perspective. Could it be you are projecting some of the challenges you faced during your own growing up years to your son, and this could be the basis of your anxiety?

    The good news is we now have better strategies for support and treatment options for kids who are diagnosed with TS.

    As you alluded to, we now have behavioural therapies that can teach kids how to effectively manage their symptoms and the situations that tend to exacerbate or maintain their tics. Tourette Canada has programs available to you for support within your family and in your son's school, if it ever becomes necessary.

    Behavioural therapies provide information and knowledge about the factors that affect tic activity, so that knowledge can be used to manage symptoms.

    You may find some insights into your own feelings in this post: Guilt and Shame

    and,

    to give you some insights into behavioural therapies for Tourette, our Forum has an entire section devoted to the topic:

    Comprehensive Behavioral Intervention for Tics (CBIT)

    I want my son to know that he is not alone and many others have this as well. If I can get him friends right away with other like him that might help him down the road.
    Come to the Tourette Canada National Conference in Niagara Falls this October where your son can meet and interact with lots of kids living with Tourette. You can meet other parents and have the opportunity to connect with local Chapters and resources.

    How are you doing with your own symptoms at this stage of your life, TnT?

  5. #5
    Join Date
    Jul 2015
    Location
    Milton
    Age
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    Default Re: I Passed It onto My Son :(

    Hi Steve

    Thank you so much for all the information you have provided me. You have a wealth of knowledge about this. I'll be sure to pick up the book a Family's Guide to Tourette Syndrome, the genetic article was very informative and so was the marijuana post.

    Yes the struggles in my childhood were hard and I'm happy those days are long gone. Even though there was no tools and support those days, my parents battled tooth and nail for my support with the schools and to find out what was happening to me. We did try medication, but the side effects and what it was doing to me was not working so I stopped. From my understanding it started at the age of five, but after talking to my mom the other day she mentioned that it really got bad after the death of my grandfather at the age of 10. That was the first death experience for me and it got worse after that, so maybe a possible traumatic event set it over the deep end perhaps?

    As for my son we don't have a
    definitive diagnosis except for the signs that I know of personally growing up with. My wife and I think we'll just observe him during the next few years and see how it goes. I believe you are right that at his age he really doesn't need to be poked and tested as of yet. We will talk to my DR and let the caregivers know to observe him as well but not to bring anything up to him about it. My wife and I will go to the events and get as much information in as we can on our own sake. We are trying to find out when the best time would be to have the talk with him, and what to say without causing any problems or fear if we have to. I guess my anxiety for me regarding my son is the fear of him experiencing everything I went through. You never want to put your child in harms way. You always want to protect your child and to have them live the best life possible. It also could be the fear of all of it re surfing again after all those years of building up a wall around me and forgetting about it and moving on, then having to face it all over again, but now I feel that now I'm older and stronger to except the fact that I have it, and not feel afraid to tell anyone if the need rises.

    Since you seem to have a great understanding of TS I was curious to know what you think of the diet discussions I've been reading about that seems to be helping individuals? Restricting glutton products, food coloring, sugars, etc? Also I was wondering if you have ever heard of ASMR? I'm not sure if this relates to TS in anyway but there was another strange thing I had growing up with TS all my life, and that was head tingles from certain noises.( Yes it sounds strange) It's very relaxing and soothing. Do you remember watching the TV show painting with Bob Ross? I would watch that show for hours and it would relax my tics from the soothing voice he would make and the noises from the paint on the canvas. A year ago i went on youtube to see if i could find the show again for old time sake and i came across something completely amazing!! I found out that i was not alone with this condition and it has a name....its called ASMR, and youtube is filled with ASMR videos. Not many people have this feeling, but i have seen a few individuals discuss that they have TS and ASMR as well. I'm wondering if there is a link between the both of them? When ever i get irritable leg syndrome (a Link between TS I've heard) I'll listen to ASMR and the wave of Tingles put me to sleep and no ticks kick in.

    As for my symptoms at this stage of my life, it's seems to be ok. They're there, but they don't interfere like they use to. I'll still do the blinking, teeth clamping and a few others, but its mostly if i'm tired or overly stimulated. In the presence of others, no one would ever think i had anything as i guess I've mastered the masking of it you could say.

    Thank you

    Tom

  6. #6
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    Default Re: I Passed It onto My Son :(

    Thanks Tom for a thoughtful and informative reply.

    Several points you mentioned about your own symptoms, increased tic activity following your Grandfather's passing, increase tic activity mostly if you're tired or overly stimulated, and the soothing effect, reducing tic activity of Bob Ross programs all precisely reflect, the manner in which Tourette tics are influenced by environmental factors.

    Tics are involuntary, but they are influenced by both internal and external environmental factors, situations, people, places and feelings...inside our body and outside our body.

    Stress, fatigue, anxiety and excitement are the common internal factors while reactions of others, being alone, watching TV or video games, among many other situations can affect tic activity.

    On the other hand, activities requiring focused attention such as drawing, singing, playing a musical instrument...even juggling keep the basal ganglia in the brain busy and tics virtually disappear!

    See: Much More Being Learned About Tourette Syndrome

    and:

    Tourette tics vanish on stage for Nashville performers

    Your experience with Bob Ross programs shows how using relaxation techniques like guided imagery and progressive muscle relaxation can have calming effects on our bodies, thereby reducing tic frequency and intensity.

    Like many of us adults, myself included, we have discovered many of these strategies on our own through trial and error over the years, and in some cases, over decades, to successfully manage our tics, as you alluded to.

    The researchers who developed CBIT have ingeniously documented these strategies, and have put them into a comprehensive program they can teach a child in about eight weeks, at an early age (10 - 14) so they can confidently grow up and focus on their academics, their social life and eventually on careers, without being overly focused on their tic symptoms as those of us who grew up in times of reduced awareness did.


    I guess my anxiety for me regarding my son is the fear of him experiencing everything I went through.
    Tom, your son has amazing advantages that you may not have had to give him opportunities for dealing with any potential symptoms.

    You have knowledge and access to resources your parents and you may not have had during your own growing up years. There are support services available to you from Tourette Canada in various forms, including help with your son's school if necessary.

    As you learn more about behavioural interventions, you can pass this information to your son to help him deal with situations as they might occur.

    When to tell him? It depends on the evolution of his symptoms, and whether any of his symptoms cause him discomfort, distress or impairment to do his schoolwork or participate socially.

    That's why it would be beneficial to alert his pediatrician about your concerns, so a history can be established and followed up.

    If your son were diabetic, for example, would you hide that fact from him...probably not. Timing and need to know should be your guidelines for when to tell him and how much to explain.

    One important caveat, Tom and that is to be careful about how you show your concerns, anxieties, fears, shame, guilt and all those other complicated feelings about seeing possible symptoms in your young son.

    Kids have an amazing way to sense their parents' feelings and you don't want to project your fears and concerns onto your young son.

    Focus on wellness with your son instead. Reinforce his self esteem, and his self confidence in the things that he does. Focus on the activities and skills at which he excels, and encourage and praise him for those efforts.

    In time, once you have more information about whether or not his tic symptoms are an issue, you can deal with that later, and if your son has a solid foundation of self esteem and self confidence, he will be able to deal with any challenges much more effectively.

    In the meantime, please check out the Tourette Canada Affiliates to see which one is most convenient for you for local information, support and interaction.

    Hopefully we might see each other at the National Conference in October!

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