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Thread: Looking for a pep talk

  1. #1

    Default Looking for a pep talk

    I suspect my son has tourette's and have noticed symptons for 6 mo. I am currently trying to get him diagnosed. Until reading this message board I was addressing it mostly as a social disorder and not stressing too much about what is in store for us. My son is not yet 3. He has a series of facial tics and a complex vocal tic of stuttering. He will also go through periods of anger. Weeks where we'd like to have the "Super Nanny" stay with us and then he's back to his old self. After reading this message board I'm feeling a bit overwhelmed of what we might be facing in the future. I realize that most children don't get diagnosed until a much older age and I worry that because he is so young, the severity of his tics will increase. As we are trying to compile information about this disorder, I find it discouraging. Discouraging as to the certainty of my son's future. I realize that information is power and I am trying to empower my family to deal with this syndrome.
    Any advice?

  2. #2
    Join Date
    Apr 2005
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    Ottawa, Canada
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    5,870

    Default Looking for a pep talk

    Welcome to the TS Forum! Your concern is understandable, but at this early stage, it would not be productive for you to get ahead of yourself.

    Has your son been seen by your Family Physician or by his Pediatrician?

    Have either of these offered a diagnosis or is the concern about TS based on you own observations?

    It sounds like you may have a referral to a specialist...can you tell us something about that specialist and whether she/he is known to have a professional interest in TS? This is really important because, unfortunately at this time there is no blood test or other diagnostic tool that can diagnose TS. The diagnosis is based on the physician's training and experience with the disorder.

    Could you share with us some of the sources of your research into TS. Forum members are always looking for new information sources.

    If possible, copy and paste the URL of the websites you visited.

    TS is not a death sentence and most of us can live very happy and productive lives. The support of our families and loved ones is the one most important factor in determining how we will cope with the challenges of of our lives.

    We will look forward to hearing your comments and reports on your progress.

  3. #3

    Default Looking for a pep talk

    Thanks Steve,
    My son's pediatrician dismisses my concerns as anxious behaviour. I have contacted a woman who's son with Tourette Syndrome had the same pediatrician and they eventually let him go because they weren't getting anywhere with him. She recommended another doctor who is a child psychiatrist. I have an appointment set up with him later this month. I would have expected I needed a refferal to a neurologist for diagnosis but in this early stage I'm not sure where to turn.
    My husbands's family has a lot of neurological conditions. an uncle with Parkinson's, a cousin with M.S. and her brother we feel has Tourette's. The family is not open to discussion but his symptoms are so strong that there is no question from a lay person that he suffers from Tourette Syndrome.
    We have been to the eye doctor and my son's eyes are fine. A speech pathologist will be coming to the house next week but only as a means of rulling it out. After speaking with the speech path over the phone I was assured that my son's symptoms fall beyond the realm of his help but he agreed to evaluate anyhow so I would have some fighting power with my son's pediatrician.
    If you can recommend another direction for me to take in diagnosing my son, I would appreciate any help.

  4. #4
    Join Date
    Apr 2005
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    Default Looking for a pep talk

    Unfortunately some physicians are unable to provide the kind of support needed under the kind of situation you are experiencing. If another parent experienced the same kind of behaviour from that particular physician, then perhaps you may want to consider looking for another doctor, if that is a viable option in your area.

    A physician should be your partner in helping you with your health issues, not an antagonist IMHO.

    Have a look at the list of Chapters and contact people HERE provided by the TSFC. There is a Chapter in Windsor which may be close enough to give you some local direction.

    >>>The family is not open to discussion but his symptoms are so strong that there is no question from a lay person that he suffers from Tourette Syndrome. <<<

    It's not unusual to find resistance to talk about one's TS tics and manifestations. For many people it's a dark secret in their lives and for lack of knowledge, they are embarassed because they think they are the only ones in the world doing these things.

    Fortunately your love and concern for your son will provide him the strength and self confidence to enjoy a good quality of life.

    Let us know how you make out with a Chapter contact.

  5. #5

    Default Looking for a pep talk

    KBT

    I live in Windsor. My son is 6.5 and just received a "tentative" diagnosis of TS in the fall of 2004 after we fought with every "professional" we came in contact with to try to get down to the heart of what was going on. Many well intentioned but ill informed people will try to dismis your early worries as your son is so young.

    Please feel free to email me at tina1973@gmail.com I would be happy to assist in any way even though I am relatively new to all this(TS stuff that is). Also, I work in the field of early intervention so I may be of some assistance with helping you access appropriate resources.

    As for your feelings about all this, It is so hard to watch your child struggling, we really pushed for the diagnosis after our ds entered a peiod of vocal tics/stuttering so bad that he could not talk at times and seemed to be in pain from the strain. The speech path was able to help us with some strategies that "eased" his stuttering so he at least wasn't putting so much strain on his vocal cords.

    Good luck and try not to worry too much, after a while it does get easier. Look forward to hearing from you
    Tina

  6. #6

    Default In the same boat

    My son Andrew who will be turning 6 very soon has been having tics for at least the last 2 years. We have a pediatrician who is profoundly respected in our city and often appears on the news and in the local paper spouting his opinion on every known childhood disorder. The problem is that he has been dismissing my concerns over this. We have a major shortage of doctors here (in Calgary) and so the choices are very limited.
    Thinking that it was not a medically related issue (after discussion with the ped) we started taking Andrew to a therapist when his blinking and throat clearing didn't stop. He was also stuttering a little, but I was told that in children his age (4 years old at the time) that is common. The last 2 months my son has been repeating the last sylable in every sentance between 2 and 7 times. Like a record that is skipping. There can be up to 5 second delay between each sound, so it becomes pretty obvious that it's not so much a stutter since he's done getting out the words, just repeats the sounds over and over. His kindergarten teacher has noticed he has withdrawn from the other kids in that same time and that he seems unhappy. They are learning to read right now and he soars when he reads to me at home, but doesn't want to participate in class.
    I too work in early intervention (mostly in the field of Autism), but feel that there just isn't enough information about TS available, and fighting the doctors seems like a common battle for parents.
    Luckily when my daughter had a speech delay when she was little, I learned about being the pushy mom. Ha ha. We'll get there.....eventually.

  7. #7
    Join Date
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    Default Looking for a pep talk

    Colleen,

    Have you been in contact with the TSFC National Office about contacting a local resource unit in Calgary? Click HERE for the information

    Though your son needs to be seen by a specialist who can confirm a diagnosis of TS, the fact that his tics began at about age 4, and the repetition of the last thing heard (echolalia) may point to TS.

    It is not unusual for high profile physicians to not fully understand TS, as the training in medical school often glosses over the disorder. In addition a physician needs to have an interest in the disorder, to be able to make a definitive diagnosis. If there would be a simple blood test, which, as you know there isn't, anybody could do it!

    Please keep us informed of your progress and when you locate a resource in Calgary, please share it with the Forum by posting the information.

    Regards,

  8. #8

    Default Looking for a pep talk

    Thanks Steve,

    So far I haven't been in contact with any particular groups. TS only occured to me in the last few weeks. It was a matter of putting the bigger picture together. My sons father has both OCD and AD/HD, so the doctor was hyper focussing on those, but basically dismissing all of our concerns as either normal childhood behavior, or as a reaction to stress.

    I was talking to my mother today and she was telling me about possible tics that I had as a child. It's very interesting to look back into my own childhood with a new perspective. I have no idea if I had it in a mild enough form that it went undetected or I'm seeing something that wasn't there. Even to this day I sometimes get stuck on a sound when talking and trip going up and down stairs because it's like I get a muscle twitch and my legs don't do what I want. I've actually fallen down the stairs a few times because of it. These behaviors started in the last few years and I never had them before. Makes me wonder if TS would explain that for me.

    If I find anything here in Calgary, I will let you know. I'm still early into all this because for so long my sons "behaviors" were thought to be a reaction to changes (like moving to a new house). We were told to treat it as a psychological issue. My own family doctor is amazing and I trust that if she doesn't know, she'll send us to a specialist. It was more a matter of convincing her to squish Andrew into the practice so that we can make that next step. We will be seeing her this week and I'll let you know what we discover.

    Glad I found this board,

    Colleen

  9. #9
    Join Date
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    Default Looking for a pep talk

    >>>These behaviors started in the last few years and I never had them before. Makes me wonder if TS would explain that for me. <<<

    Colleen,

    TS is generally considered as the cause when the tics begin before age 18, so the leg weakness may be attributable to some other condition.

    This should be reported to your physician, and a consultation with a neurologist might be suggested.

    It is not unusual for people to learn they have TS late in life, as it was in my case. I managed to get through life by suppressing tics in social situations where others were present and would "let them out" when I could be alone.

    Sounds like you might be doing a lot of research in the next little while.

    Keep us informed of your progress.

  10. #10

    Default Looking for a pep talk

    I think I probably did have tics as a child. I just didn't have that particular one. I did go through an exceptionally clumsy stage at about 6 according to my mother, but not sure if that was in any way related. My "tics" if that is indeed what they were were more to do with my hands and feet (sudden but slight jerking motions) and eye twitches. I don't believe that I have any other conditions. I am just more careful going up and down the stairs now. It is only dangerous when I move quickly. If I'm going up and down slowly, I can catch myself no problem.

    I will keep you updated though.

    Colleen

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