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Thread: New and Needing Information!

  1. #1

    Default New and Needing Information!

    Hello!
    We haven't had a doctor confirm this yet, but my step son seems to display some of the symptoms of TS. The more I read the more it sounds very possible. My son is 13 years old and has a twin brother, who doesn't display any signs. He has recently started to "grunt". Prior to that he was "sniffing" all the time. Along with these symptoms he does the shoulder shrugs. I don't want to over react, but I do want to be proactive and collect all the information I can. I am concerened when we take him to the doctor next week, it will just be passed off as nothing. Great if it is, but if it isn't, I want to ensure we can do everything possible to control it and to be able to be the best support system for him. I guess what I would like to know is what should I ensure the doctor does to try & diagnose these symptoms. Is it possible that it is just the age or a phase he is going through and will out grow? Or will it progress into stronger symptoms? I am frightened for him and I need to get educated so that I can be there for him with every step.
    Right now so many thoughts are running through my head as tears stream down my face...
    Thanks for listening....
    Scared in Guelph~

  2. #2
    Join Date
    Jan 2004
    Posts
    557

    Default New and Needing Information!

    Hi and welcome:

    You have come to the right place to get some more information. There are lots of information throughout this forum, and lots of people who can help to answer some of your questions.

    My suggestion when you talk to the doctor next week is to be prepared to give the doctor an idea of how often you see the shoulder movements and hear the sniffing or grunting. You may also want to check with your son's teacher to see if he is doing this is school as well. Also ask your doctor if he has experience with other patients with TS.

    Some children do develop tics that show up for awhile and then disappear again after a few months, or longer. Your doctor, or a specialist that you get referred to, can help determine what is going on with your son.

    The diagnostic criteria for TS is available here.

    There is a chapter of the TSFC in Wellington-Waterloo. You can find their website here.Their website lists their next meetings and other activities as well as their contact information.

    You can get a package of information on TS by calling our National office at 1-800-361-3120.

    Feel free to post any questions you may have, either leading up to your son's appointment next week, or after it.
    Cathy
    Forum Moderator
    TSFC Homepage

  3. #3

    Default New and Needing Information!

    As Admin1 said before. The best thing to do is be prepared by watching and having any questions you have ready. Many people do experience light tics during a part of there life but due to your sons age having a doctor make that desicion would be best. TS is known to form(thats a bad word for it) between 6-12(I think, correct me if Im wrong).
    The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

  4. #4
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default New and Needing Information!

    You came to the right place for support and you are not alone.

    It is wonderful that you care so deeply for your step son and want the best for him.

    There is a local pediatrician in the area that works on diagnosis for TS and other disorders. She works from Guelph General and not sure if she has a office.
    You also have Hamilton, Lynwood Hall. They have a wonderful team that work with children and determine the needs. Most of the tests are done in Hamilton since Guelph is limited on scans.

    Keep a journal and notes to ask the Doctor. The sniffing we have gone through and was one of the first tics. We thought our son had allergies and so did the Dr. at first. Shrugging and grunting can be tics too.

    How long have you been a blended family?
    Are there stresses that obviously are common in the household but could add to anxiety for a child?
    So many causes can set symptoms off and the age is perfect for a roller coaster of emotions.

    Please keep us posted on your progress and push for the answers needed. Your Dr. can refer you to the Pediatrician I am referring too. She has a reputation in Guelph and it is a good one. She is more clinical then some but she understand research and is very focused.

    Don't ever think you are alone, you always have support here.
    PJK

  5. #5

    Default New and Needing Information!

    I have one and only one suggestion: Make sure the doctor observes him in the waiting room without him knowing he's being watched! This is what my doctor did. Kids with TS have this odd little way of ceasing all tics the minute they set foot in a doctor's office. Most doctors have to see it for themselves to understand that there's something "not right" going on. Otherwise, they tend to dismiss it as a "habit" or "nothing to worry about." But if the doctor just stares at him in the exam room, you can be sure he's not going to see a single tic! Perhaps you can contact your doctor beforehand and ask him to unobtrusively watch your son for a few minutes in the waiting room.

    I was first sent to a psychiatrist who was an idiot. He looked at me and said, "Tic for me," as if it was something voluntary I could do on command! Then he told my parents that I didn't have TS because a kid with TS can't dress himslef or go to the bathroom by himself. So if you get any ignorant comments like that, turn and run!

    Luckily, the second doctor I was taken to was a very wise neurologist. We went into the exam room and the firts thing he says is, "Your daughter has TS." My parents were rather shocked and said, "But you haven't even examined her. Arent you going to look at her?" He told them that he had just watched me for 15 minutes playing in the waiting room and had seen all he needed to see to make the diagnosis. Clever man. He knew that observing me in the exam room would be fruitless!

    Anyway, good luck! And keep us posted.....

  6. #6

    Default New and Needing Information!

    Try to record the tics on camera. As mentioned before the tics seem to disappear when at the doctor's office. I would also capture the twin brother on camera as well so that the difference in the two boys could be noted by the professionals.
    I brought in the video camera and tapes so that the doctor could view the tics in my presence. Until I did this, we were not being taken seriously.
    Good luck.

  7. #7
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default New and Needing Information!

    KBT:

    Good idea! It is nice to see someone else so proactive to get the point across once you are finally in the Dr. office.

    Keeping a journal on daily experiences helps too. It creates a pattern that can be followed or tracked.

    You have to keep in mind though, there will be good days and some real bad ones too. I am sure you already know this.

    Good to see you on the forum and take care.
    PJK

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