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Thread: New here - really desperate for help

  1. #1
    Join Date
    Jan 2015
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    Ottawa
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    Default New here - really desperate for help

    Hi everyone,

    We really need help. My son started having tics last fall when he was 9. In the beginning, the tics seemed like body tremors, like a tremor would run through him. These evolved into more aggressive movements, punching, kicking, slapping, and smaller facial tics. He also has vocals - humming, grunting, whistling. But since the holidays, he has gone through an extremely bad exacerbation - screaming, yelling, screaming obscenities, full body convulsions, more kicking, punching, over the last 6 months, he has kicked many holes in the walls, just from repeated ticcing in the same spot. He spent several hours each day lying in bed, screaming and kicking, and crying in between b/c he was so scared.

    The week of New Year's and after were particularly bad. He started having panic attacks because he couldn't stop screaming. We ended up at the ER, but they couldn't do anything for us except an rx of risperidone. We tried that (0.25mg) but it made him wake up in the middle of the night, unable to get back to sleep. So he is on clonidine now (0.05mg morning, 0.1mg before bed). It's not really helping.

    He has developed these strange phobias or triggers, that when he encounters them, it causes a 'tic storm' - lots of screaming, swearing, motor tics - the aforementioned kicking, punching, throwing things. His triggers are: feet (anything to do with them, even mention the word 'foot' or 'feet' like 'football' or 'i'm 5 feet tall'), insects (he flipped out today after seeing some emoji on the ipad) and people coughing/sneezing/irritating noises. These 'tic storm's used to last longer but now we try to redirect him, focus on something else and it lasts 5-10 minutes.

    We can't go out anywhere. He missed a week of school, then he wanted to go back. He is able to play futsal (but we can't say 'futsal' because it has the word 'foot').

    I am at a loss. We try to shield him from the triggers, but insects, feet, are everywhere - he can't even look at cute cartoon insects. I don't understand what is going on. Please any help!?

  2. #2
    Join Date
    Nov 2014
    Location
    Canada
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    22
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    30

    Default Re: New here - really desperate for help

    Hey there, welcome to the forum!

    It sounds like your son is going through an extremely difficult time. I just want to provide you with a message of hope.

    Despite suffering from TS myself (involving shouting obscenities), I don't allow this to influence my life. I still go shopping, talk to people, go for walks, etc.

    I also knew a man with severe Tourette Syndrome and coprolalia who had a great career.

    I know things might seem desperate right now. I also know that severe Tourette Syndrome doesn't have to prevent one from engaging in everyday activities.

  3. #3
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: New here - really desperate for help

    Welcome to the TSFC Forum, Momof X. Thank you for joining us. I hope we can provide you with the support and information you need in what appears to be a very difficult time for your son and for you.

    Being in Ottawa, I presume your son was seen at the ER at CHEO, is that right?

    Was your son given a referral to be seen by the Tourette Team at CHEO?

    Has your son been officially diagnosed with Tourette Syndrome or some other tic or movement disorder to date?

    Can you identify the reason why these specific triggers, feet and insects, have such a profound effect on your son to affect his tic frequency and intensity?

    It is not uncommon, however that when people cough, express vocal tics or create noises that are irritating, that tics can be made more frequent and/or intense.

    we try to redirect him, focus on something else and it lasts 5-10 minutes.
    Would you elaborate on exactly how this works? What do you mean by re-direction and what would be a typical example of situation where this intervention works.

    Are you aware there is a very active and supportive TSFC Chapter in Ottawa, of which I am a member, that meets monthly?

    The next meeting will take place Tuesday, February 10th, 2015 from 7:30 -9:00pm

    Royal Ottawa Hospital, 1145 Carling Avenue, Room 1420 (signs will be posted). Everyone is welcome! You do not need to be a member to participate.

    In the meantime, feel free to contact the Chapter's helpful president, Jill please call Jill at 613-823-0675 or send an email at info@tsottawa.com. Tell Jill I pointed you to her.

    If you need help with navigating the bureaucracy at CHEO, Jill has considerable experience and insights and can be an invaluable resource person for you.

    I'll be looking forward to your responses and comments to the questions I raised.

  4. #4
    Join Date
    Jan 2015
    Location
    Ottawa
    Posts
    22

    Default Re: New here - really desperate for help

    Thank you Steve and swearingTourettesMan, for your replies.

    I'll try to answer all your questions:
    Was your son given a referral to be seen by the Tourette Team at CHEO?
    Yes, we will be seeing them this week.

    Has your son been officially diagnosed with Tourette Syndrome or some other tic or movement disorder to date?
    Not officially, but he has a 'movement disorder'.

    Can you identify the reason why these specific triggers, feet and insects, have such a profound effect on your son to affect his tic frequency and intensity?
    I don't know! That is why it is so bizarre! It wasn't so bad over the summer, when all he would do was ask us to put on socks. He was able to go swimming just fine, where there are a lot of feet. Now this aversion is getting really bad. He says he closes his eyes when he puts on his socks. Is this some form of OCD??

    we try to redirect him, focus on something else and it lasts 5-10 minutes.



    Would you elaborate on exactly how this works? What do you mean by re-direction and what would be a typical example of situation where this intervention works.
    I just try to talk to him about other things, ask him questions, keep the conversation going, or let him continue on his iPad game. For example, the other day I picked him up for lunch from school and he was yelling and saying "OOHhhhhhh!!!" like he was scared and kicking/hitting a lot, and he said he saw something he didn't like at school (i.e. one of his triggers). So I ignored his tics and just said, so is such-and-such okay for lunch? and other stuff and he seemed to get over quicker. Or I can distract him by throwing a ball at him to catch or some physical running around (house tag) or playing with him. Sometimes it doesn't work as well.


    Are you aware there is a very active and supportive TSFC Chapter in Ottawa, of which I am a member, that meets monthly?
    Yes, I have searched for a support group. Unfortunately, it's at a difficult time for me to attend, but I will try. Thank you.
    Last edited by Steve; January 18, 2015 at 09:55 PM. Reason: quotes

  5. #5
    Join Date
    Aug 2012
    Location
    USA
    Posts
    141

    Default Re: New here - really desperate for help

    Hi MomofX!

    Cognitive Behavioral Therapy is very good for phobias, if this is what your son has. I did this and was happy with the results. Once you learn to do it with a professional, you will then be able to do it by yourself in case you want to work on another irrational fear.

    I'm not sure if your son would be old enough, but you might ask your doctor about this.

  6. #6
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
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    Default Re: New here - really desperate for help

    I just try to talk to him about other things, ask him questions, keep the conversation going, or let him continue on his iPad game. For example, the other day I picked him up for lunch from school and he was yelling and saying "OOHhhhhhh!!!" like he was scared and kicking/hitting a lot, and he said he saw something he didn't like at school (i.e. one of his triggers). So I ignored his tics and just said, so is such-and-such okay for lunch? and other stuff and he seemed to get over quicker. Or I can distract him by throwing a ball at him to catch or some physical running around (house tag) or playing with him. Sometimes it doesn't work as well.
    I believe you are on the right track, MomofX, in ways that many of us, as adults, have discovered over the years, that there are ways to manage tic symptoms by essentially "doing something else".

    This concept has been researched and fine tuned in recent years by Tourette Syndrome therapists to develop behavioural strategies that have been shown effective in managing Tourette tics. This form of therapy, Comprehensive Behavioural Intervention for Tics (CBIT) is discussed extensively on this Forum.

    As Twidget alludes to, your son may be a candidate for behavioural intervention to help manage his phobias and his tic symptoms, but would require an assessment by a medical professional to determine if his sense of self awareness is adequately matured at his age of nine to respond to cognitive therapy.

    Self awareness is thought to mature at about the age of ten to twelve, but sometimes younger, which is why a competent assessment is required.

    The concept of CBIT in its most basic description is to teach the individual how to block a tic by doing something else to satisfy the urge to tic.

    There is more to it than that, but essentially Tourette tics can sometimes be managed using an organized and specifically tailored program of learning to manage symptoms using knowledge about how one's disorder operates within their own body.

    There is, of course, no cure for Tourette, and there is no therapy or treatment to date that can eradicate symptoms, but there are strategies we can learn to help us manage our symptoms, so we can live a productive, happy life.

    Among the numerous articles an posts describing CBIT, you may find the following article informative.

  7. #7
    Join Date
    Jan 2015
    Location
    Ottawa
    Posts
    22

    Default Re: New here - really desperate for help

    Steve, how would I find someone to assess him for CBIT? My son is 10.5 now, the tics started when he was 9. I know that he knows when a tic is coming and he is sometimes able to suppress or redirect it, especially when he is playing with his toddler aged cousins. He never does his punching/hitting type tic with them; instead, you can see it starting and transforming more into a gentle caress or patting on the back/head.

    My biggest concern, or fear really, is these bizarre triggers (the feet, insects, "gross" things) that makes him tic so severely - it really looks like he is having a tantrum with all his screaming and kicking around. Even the mere mention of them causes these 'tic storms'. After New Year's, when he was particularly bad, he had one day where he told me he couldn't stop thinking these "bad thoughts" (i.e. about his triggers) and he basically spent the entire day ticcing like crazy, unable to do anything else or calm down.

  8. #8
    Join Date
    Apr 2005
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    Ottawa, Canada
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    Default Re: New here - really desperate for help

    MomofX,

    To my knowledge, there is no one in Ottawa at this time who has undergone CBIT specific training by the Behavioral Training Institute, the TSA body currently training medical professionals; however there are a few therapists in Ottawa using cognitive behavioral therapy with children with Tourette Syndrome.

    I will send you a Forum Private Message with the contact information of a therapist you may wish to contact.

    CBIT training is relatively new, and the TSFC is diligently working on arranging training opportunities in various parts of the Country for the benefit of medical professionals.

    At this point, I feel that we, as people living with Tourette need to alert our medical professionals that CBIT is an effective modality of treatment and that we would like to see more medical professionals become familiar with it to be able to offer it as an option.

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