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Thread: New member.... mom of TS son

  1. #1

    Unhappy New member.... mom of TS son

    Hello there,

    My son is 14 years old and was diagnosed with TS about 3 years ago. We had noticed for some years that he had transient tics but as they were not interfering with his life or ours, we just let them be.

    The tics started to become an issue very suddenly, when he was prescribed Nasonex nose spray for allergies. He developed a nose/throat twitch that we dubbed the "killer bunny, bullfrog" look. He was completely unable to control this and we figured he was allergic to the nose spray. The allergist told us to stop the spray (we already had) and referred us on to a neurologist. The neurologist observed at least 11 different tics at that time, but since the bunny/bullfrog had left, none was bad enough to medicate and we just went home armed with more information.

    Recently, the tics have become increasingly bothersome. They are causing headaches, sore throat, sleeplessness, as well as funny looks and disruptions in life. At the age of 14, we figured that we were past the "peak" for the tics. We had managed to get by without medication, but right now the social, emotional and physical repercussions seem to be too great to ignore. Truly, Al is being medicated....he takes benadryl some nights to assist with the histamines and to help him sleep, he takes tylenol or advil sometimes to help with the headaches, and he is still taking taurine and GABA as natural supplements to assist with the tics. Additionally, he is on monthly allergy shots for his seasonal allergies.

    Currently, Al's tics include snorting, sniffing, eye rolls, head twitches, arm flaps, and some verbal sing-song version of "excusay moi, moi, moi" (right after a snort) among others. I am sooooo afraid of medicating although my gut says it may be time. I don't want my child to feel that he isn't "good enough" as he is for us. I don't want to "lose" my child in a medicated haze.

    When and how does one decide where to go from a point like this??? I have a call in to the neurologist as well as an email to a naturopath....we are desperate to help this child....he is off to highschool in the fall and concentration right now for both him and his class is already difficult, impacting education. Socially, he is definitely being noticed in a not quite positive light. Physically, he is both uncomfortable and in pain.

    Any feedback?!?!?!?

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: new member....mom of TS son

    Welcome Alsmom and than you for joining the Forum!

    Al is most fortunate in having a dedicated Mom to provide help and support.

    I don't want to "lose" my child in a medicated haze. ...When and how does one decide where to go from a point like this???
    Your concern is valid, and by bcoming informed about Al's options you can have a meaningful conversation with Al and his physician.

    If the neurologist Al will be consulting has clinical experience in treating Tourette, it is unlikely s/he would compromise your son's ability to function by prescribing medications that would adversely affect him.

    I would advise you tell the neurologist about everything your son is currently taking, including all non prescription preparations as well as prescribed meds. You want to avoid any unexpected interaction with non prescription preparations.

    I have a call in to the neurologist as well as an email to a naturopath
    I would respectfully suggest you consult with the neurologist and not the naturopath. To my knowlledge, there is no available scientifically confirmed evidence naturopathic interventions have any benefit in treating Tourette Syndrome, while your neurologist does have proven strategies that can benefit Al.

    There is no "one magic bullet" that treats every symptom of Tourette Syndrome, as it depends on what aspects of the disorder are causing the greatest disruption to Al's quality of life. There may be non medication strategies that might be considered as well, such as Cognitive Behavioural Therapy (CBT) if it is felt it might be right in Al's case.

    The doctor may find that medication to treat or control only some of his symptoms might be appropriate while providing other strategies for the rest.

    Socially, he is definitely being noticed in a not quite positive light.
    This is where Mom can be of help, by reinforcing his self esteem and self confidence. Al is a great young man who happens to have Tourette Syndrome, but Tourette should not define who he is.

    Information, education and awareness are the solutions to any negative responses to Al's Tourette symptoms by any of his friends, teachers or family members.

    Al needs to be able to articulate and explain that he has Tourette Syndrome, a neurological disorder, and that his tics are as involuntary for him as routine eye blinking or scratching an itch would be for anyone else.

    Have a look at our Forum section we call Tics Overview where among the "Sticky" articles there are a number of printable brochures and handouts Al can pass on to people he wishes to inform about Tourette.

    Your local support organization may even have In Service Training for teachers to better acquaint them in how to support a student with Tourette.

    If Al woud like to join this Forum (using his own username and registration) we would be pleased to provide him with help and support and he would have the opportunity to meet other young people in his situation.

    Have you located a local support organization close to your community?

  3. #3

    Default Re: New member.... mom of TS son

    Thanks for your response Steve!

    You said:
    "This is where Mom can be of help, by reinforcing his self esteem and self confidence. Al is a great young man who happens to have Tourette Syndrome, but Tourette should not define who he is.

    Information, education and awareness are the solutions to any negative responses to Al's Tourette symptoms by any of his friends, teachers or family members.

    Al needs to be able to articulate and explain that he has Tourette Syndrome, a neurological disorder, and that his tics are as involuntary for him as routine eye blinking or scratching an itch would be for anyone else."
    Al has been a fairly strong self-advocate over the years. Last year a classmate told him to "stop that...that throat clearing is annoying" and Al's response was; "yes, it is! But I have Tourette's and I get a sore throat from it yet too, so it is even more annoying for me than it is for you!" He is also extremely fortunate to have a best friend who advocates for him as well. The 2 of them have been like brothers since preschool and it is wonderful for him to have someone in his class who just "gets it".

    Unfortunately, Al is no longer quite as strong an advocate as he was a few years ago...the kids are all getting bigger and many are too focused on themselves to find the understanding that Al needs from them.

    My husband and I (and our boys for a couple of weeks) attended a course (2 hours once a week for 6 weeks) about 1 1/2 hours from home in the fall which focused on Tourette's and it comorbid disorders. Al suffers to some degree from anxiety, and always has, but that is about it for the disorders that tend to go hand in hand with Tourette's.

    Thanks for your advice about the naturopath too! I am just feeling so lost and helpless right now! I thought I was well educated about this and that we had made logical and well-thought-out decisions about not medicating and that we were on the downward slope after peaking with the "mild" tics a couple of years ago....yikes!

    Although I know logically and rationally that this is not my fault, or anyone else's for that matter, I still feel guilt....yuck! What if we do medicate and Al gets a lot better....I will be kicking myself for a long time then.....longer if we medicate and he gets worse......sigh....I guess there just aren't any easy answers, are there....
    Last edited by Steve; May 8, 2011 at 09:28 AM. Reason: add quote format

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: New member.... mom of TS son

    Alsmom,

    Thanks for clarifying your situation about the excellent support you have been providing Al, and about his own self advocacy.

    If Al is experiencing elevated anxiety, his doctor may be able to offer some treatment options. People with Tourette are thought to have a higher baseline anxiety level to begin with, so external anxiety provoking situations tend to raise the anxiety level even higher.

    Elevated anxiety is treatabale.

    As a parent there is no more reason to feel guilt about a child having Tourette than if the child were diabetic or had an astygmatism. These are disorders over which you have no control or influence.

    What if we do medicate and Al gets a lot better....I will be kicking myself for a long time then.....longer if we medicate and he gets worse.
    Idon't believe there is any evidence that medications have any lasting effect on the outcome of the disorder. The medications do not cure the disorder, but rather control symptoms, so consult with a specialist with clinical experience treating Tourette and seek that doctor's advice on treatment options that could be right for Al.

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