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Thread: New diagnosis

  1. #1

    Default New diagnosis

    I was on this site about 7 months ago when we got started on the path towards a diagnosis for my 6 year old son Andrew. About 2 weeks ago we finally got a diagnosis of "tic disorder". From what i read my son qualified for a TS diagnosis, but when I asked the neurologist he said that a diagnosis wasn't critical in our case. Andrew has had tics for at least 2 years and has had multiple motor and vocal tics. My son won't need to use medication at this point. However, it has been effecting his schooling. That may be because of a comorbid diagnosis of OCD and ADD, but we are waiting on those (as per the doctors recommendation and his age).

    In some ways I agree about less need for a diagnosis, but in some ways it feels like we are still in limbo. Does anyone here know if multiple motor and vocal tics usually gets an automatic diagnosis of TS or does it depend on the severity?

  2. #2
    Join Date
    Jan 2004
    Posts
    557

    Default New diagnosis

    Hi Colleen13:

    By severity, do you mean how often the tics occur on a daily basis or how profound the tics are? (e.g. eye blinking versus jumping)

    According to the diagnostic criteria (Click here to see the criteria) the tics should occur multiple times a day. So if your child has multiple motor and vocal tics, but you don't see them on a daily basis, your doctor may feel that his symptoms do not meet the criteria for diagnosis.

    Your doctor's opinion on whether or not your child requires medication should not factor into the diagnosis. Relatively few people with TS take medication to manage tics.

    Some doctors use an older diagnostic criteria. The current criteria is the DSM-IV-Text revision. Some use an older criteria that included a statement that the tics had to cause difficulty in at least one setting.

    Did the neurologist explain why 'a diagnosis wasn't critical'?

    On another note - whether or not your child has been diagnosed with TS, the same strategies for the tics and his possible associated disorders will still help.
    Cathy
    Forum Moderator
    TSFC Homepage

  3. #3

    Default New diagnosis

    Colleen,

    I was originally diagnosed with mild TS, never givin a full diagnosis (and the nuerologist was one of the top in the country at the time) but (sorry for the tone of this phrase), it didnt take a genius to see I was "different". What I have learned is that mild or not, to me it is still a diagnosis.

    You said your sone was diagnosised with a "tic disorder". Like admin asked, does this occur daily? How sever on average are each of his tics?

    I know I can go in small periods where most or all of my tics are small and not severe and than simetimes they can become complex and occur more often. I also have been off my meds for about a year now due to I was starting to become "immune" to their effect( I took them for 14+ years, and that can happen) and I decided that I was gonna try to do it with out meds and see what happens. I know its a good feeling to have a "final" answer and than move on but if these tics are happening quiet frequently, whether its TS or not, taking action to help resolve the issue would be best.
    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 diagnosis

    Colleen:

    Doctors can be conservative on thier diagnosis with younger children. I am sure your son's case will be reviewed within a year to document any changes in his condition.

    In connection with the other disorders it will be important that the school be kept informed of the considerations. They can base the care and any programs the school can provide on that foundation.

    It can take 6 to 12 months for a complete diagnosis on the other disorders or due to age they may want to delay it longer and just monitor his condition.

    Just keep the school posted, see what services are available to curb behavior or actions at school and keep a journal of behavior & concerns so when you meet with the Doctor you can review.

    You are going down the same road most of us have experienced. It does sound like the Doctor cares so this is a bonus.

    You will find much needed support here on the forum so please keep us posted.
    PJK

  5. #5

    Default New diagnosis

    Thanks everyone.

    Yes, Drew does have daily tics. Right now the most pronounced of which is a vocal tic which has been around for about 8 months. In fact it was the one that convinced me to seek medical rather than psychological help for him. Basically he repeats a sound (usually "ah-ah-ah-ah") up to 15 times between sentences or thoughts. It has cause some disfluency and he can be difficult to understand because it does happen in the middle of the sentance when he's excited. It is most definately not a stutter because he will do it even when he's done getting the words out, where as a stutter is an attempt to say them in the first place. I work in the field of child development and had a speech therapist I work with assess some video tape of him. It was that video that actually made our pediatrician pay attention to me. Before that he didn't believe it was that bad. Andrew also had some curious behaviors like a blank stare that made the doc think it could be seizure activity, so we've been through an EEG as well. The neurologist saw him nearly 2 weeks ago and was the one to give the diagnosis. When I asked if "tic disorder" meant Tourette Syndrome, he looked at me and said "Well, does it affect him at school?". I think thats why I gather a TS diagnosis was based on severity and impact on life function. I told him that the school had some concerns, but that they were manageable at this point. He seemed great and was a very nice doctor, so I don't think he was necissarily wrong, I just had expected a TS diagnosis from what I have read. Andrew does meet the generally accepted criteria for TS.

    As far as motor tics are concerned, Andrew has mild ones right now. Mostly sniffing, throat clearing, a little bit of limb and finger twitching, etc. He's also had head twitches (infrequent), blinking, and clicking in the past.

    I have a very matter of fact attitude about his diagnosis. I work with children who have Autism, so I'm pretty used to being out in public and having people stare. Andrews tics really aren't a big deal and I don't think most people really notice him. I just want him to have a happy life. We are very lucky to have him at a fairly small school. There are only 15 students in his grade 1 class, and his teacher has been amazing.

  6. #6
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    5,843

    Default New diagnosis

    When I asked if "tic disorder" meant Tourette Syndrome, he looked at me and said "Well, does it affect him at school?".
    Sounds like a peculiar reply to a legitimate question by an informed Mom.

    Not knowing what it's like to get a specialist consultation in Calgary, it's difficult to propose a strategy in dealing with your neurologist.

    You may want to have a conversation with him/her so that the physician understands you have some knowledge about the disorder and want to participate in the diagnostic process.

    As you well know not all physicians have a true professional interest in Tourette Syndrome, nor have some had sufficient training in diagnosing Tourette.

    Have you been in contact with the Calgary Resource Unit?

    To get contact info for the Calgary Resource please call the National Office at:

    1-800-361-3120

  7. #7

    Default New diagnosis

    Yes, I actually went to a lecture last night put on by the Calgary group. The lecture was by Dr. Mort Doran who is a surgeon, professor, and pilot. He is 65 and has TS. I found it a very useful starting point as well as encouragement that TS can mean great things. I was able to touch base with the Calgary group and discussed our situation briefly. They are offering support which is great. My sons school will likely be looking into an in-service by them....which regardless if it helps us or not is wonderful thing.

    Just to be clear, I'm not totally unhappy with the lack of diagnosis.....in fact not really sure yet if I want one for Andrew. I work with children who have all sorts of disorders/disabilities and at times the diagnosis causes as many problems as it cures. I would just like to have an understanding of where we are at. I was just wondering because he does meet all the criteria. Even without tics he is a very unique child. Like a very old soul. It won't change our lives drastically....at least not that I can foresee....by having an official vs unofficial diagnosis.

    Thanks for all the support.

  8. #8

    Default P.S.

    Forgot to mention.....

    During the lecture by Dr. Doran last night I realized that I too probably had/have tics, I just didn't see them as that. I don't specifically remember any vocal tics, but I do tend to get tongue tied at times and so maybe it's all related. I have always had what I now think are simple motor tics. Andrews dad has AD/HD and probably OCD. I displayed some obsessions and compulsions as a kid too. It's interesting to look back and see what didn't seem at all obvious before.

    So basically, Andrew comes by this honestly. Ha ha.

  9. #9
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,843

    Default New diagnosis

    Glad you have made contact with reources in Calgary!

    Mort Doran is my personal hero, because in the early days of my diagnosis at age 45, when he was making presentations at the time on radio and TV about Tourette, I was inspired by his efforts to improve awareness.

    It was his inspiration which been my motivation to become involved as a TSFC volunteer.

    What were some of the highlights of his presentation you attended?

  10. #10
    Join Date
    Jan 2004
    Posts
    557

    Default New diagnosis

    Hi Colleen13:

    The fact that doctor asked you whether your child had problems at school would indicate that he is using an older version of the DSM criteria.

    I agree with some of what you have said about getting a diagnosis. It sounds like your child meets the criteria for TS, but whether or not there is an 'official' diagnosis is not as important as whether or not your son gets any accommodations he needs, learns strategies for coping with his symptoms, etc. Sometimes it is easier to access services with a diagnosis, and sometimes the diagnosis can get in the way.

    I'm glad that you have made some contacts in the affiliate in Calgary and that you got a chance to hear Mort Doran speak.
    Cathy
    Forum Moderator
    TSFC Homepage

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