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Thread: Need advise about what questions to ask

  1. #1

    Default Need advise about what questions to ask

    What a difference 2 weeks can make. During that time my son has started a new vocal tic that is very noticable and is interfering with his ability to clearly communicate. I had a friend at work who is a speech pathologist review video tape of Andrew and she said no question, it's more than just a typical speech issue. So with her help, I finally got the doctor to refer us to a neurologist, so now we wait. Likely for a few months. Blah. They are also sending him for an EEG to check for seizure activity, so of course we don't even know for certain if this is TS yet, but the doctor asked (without me even bringing it up) if there was a history of TS in the family (which there isn't), and also how long he has been having tics. I thought it interesting that he just assumed that was what they were. Kind of clued me in that TS is what they suspect it will turn out to be. Everything I read in the literature is dead on for Andrew and puts pieces together we didn't even know at first might have been TS. I just thought they were strange or quirky behaviors.

    So that is why I need some help. This is all very new to me and I know I don't know half of what I should before seeing the experts. I was wondering what questions would be helpful to ask once we see the neurologist. Please feel free to share those questions you wished you had asked, or those you were glad you did. All input is welcome.

    Thank you so much in advance for any ideas or advice,

    Colleen

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,906

    Default Need advise about what questions to ask

    Colleen,

    If the neurologist feels medications are in order, find out all you can about how the medications are to be taken, be sure the doctor is aware of all meds your son takes, both prescription and over the caounter including things like cough preparations, ant acids or anything else.

    Find out about possible food interactions, to be sure the medication is taken properly.

    Do as much research on TS beforehand, to give you insight into the disorder, and feel free to ask your questions here.

    If the neurologist has experience with TS, he/she will help you understand your son's condition, but your advance research wil provide you with the information to ask good questions.

    Is there a specific area on which you feel you need some background?

  3. #3

    Default Need advise about what questions to ask

    The amusing thing is that at this point I don't even know enough....or at least it feels that way....to know what I don't know. I will be heading to the library this weekend to gather as much background as I can . I find most of the resources on the net are just introducations to this topic. I feel sheepish to admit that I work in a school with unbelievable resources and we accept kids with all sorts of complex needs and disorders, and yet, we don't have a single book in our resource library on TS. Luckily I have access to professionals who can get me articles about it. I'm thinking it's about time for me to donate a few books to my school. Even if my son doesn't end up having TS, my eyes have been opened to how little info and awareness there really is.

    If I come up with any specific questions, I'll let you know.

    Colleen

  4. #4

    Default Need advise about what questions to ask

    Colleen,

    Might I suggest that if your not finding a ton of material on TS alone, try checking into other neurological disorders, i.e. OCD, ADD, ADHD, ALDS(I think thats right but thats an even more rare disorder than TS), etc. All of these disorders are related in some way and maybe there is some more info there. I know here in Minnesota(USA), we have the highest diagnosis of ADD and ADHD in the U.S. so its common knowledge here. Just a helpful tip maybe.
    The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

  5. #5

    Default Need advise about what questions to ask

    Excellent. Thanks Adam.

    Out of curiousity, what is ALDS? Not sure if I've run into that before.

    Colleen

  6. #6
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,906

    Default Need advise about what questions to ask

    Colleen,

    Have a look at the resources and information on the TSFC web page to begin your learning. (use the link below my signature).

    Then use a seach engine..(I lke Google) and type in "Tourette" (without the quotations) as your search word. This will return hundresd of resources you can look through for information.

    Of course in your research, check for information provided by reputable medically based sources with solid scientific background and avoid sites that appear to be selling something.

    Once you get more info, please continue sharing your views and comments and questions here, for the benefit of our Forum members.

  7. #7
    Join Date
    Jan 2004
    Posts
    557

    Default Need advise about what questions to ask

    Hi Colleen:

    Additional resources are also available through the TSFC office. You can reach them at 1-800-361-3120. They can send you information on TS and related disorders.

    You may be interested in purchasing Understanding Tourette Syndrome: A Handbook for Educators. This is a great handbook for both parents and teachers and goes into much more depth than is available on most websites. The handbook is only available through the TSFC. You can get information from the phone number above, or through the TSFC website.

    If you are looking for material to donate to your son's school, the TSFC also has an excellent Educator's Kit that includes the handbook as well as a video Circle of Support, a workbook, and a facilitator's guide. There is information on this on the website as well.
    Cathy
    Forum Moderator
    TSFC Homepage

  8. #8

    Default Need advise about what questions to ask

    ALD (this is the correct name for it, sorry) is a rare disorder where the myelin (myelin is the protective coating around a humans nerves) is weaker and thinnner than a normal persons. I have read that a person with TS may have a weaker mylan than a normal persons but not to the degree of a person with ADLS. Theirs are continually going away. There is a movie on this disorder called "Lorenzo's Oil" (made in the 80's with nick nolte and susanne surandon). I have only read one book and seen the movie on this disorder so Im definately not an expert. But again, its a neurological disorder so it could be related to TS but I have a feeling you may have a harder time trying to find info on it.
    The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

  9. #9

    Default Need advise about what questions to ask

    I actually just found a bunch of info on ALD and Lorenzo's Oil using Google. It is also related to another condition called Addisons Disease. Neither seem to explain the verbal tics Andrew is having, but could explain some of the physical stuff he's going through. I'm kind of wondering if there aren't several things happening here because his physical condition doesn't seem to be merely tics. We will see.

    Thanks everyone for the ideas and support,

    Colleen

  10. #10
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default Need advise about what questions to ask

    You may be interested in purchasing Understanding Tourette Syndrome: A Handbook for Educators. This is a great handbook for both parents and teachers and goes into much more depth than is available on most websites. The handbook is only available through the TSFC. You can get information from the phone number above, or through the TSFC website.
    Hi there

    I would second Cathy's advice and source out the book listed above. I have Ts and so do 2/4 of my boys (so far). I have purchased so many of these books and have donated them to the schools, Boy scout groups, etc where ever my boys go. The reason, this book covers everything you may or may not be experiencing.

    This would be a way to assess your child. I read each section and using an "orange" highlighter, because it photocopies the best, highlight everything my chld has exhibited, even if it has passed. This is such a great tool, even provides you with strategies for school and home.

    Janet
    Janet, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

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