Thanks Thanks:  0
Likes Likes:  0
Results 1 to 9 of 9

Thread: Help in Vancouver

  1. #1

    Default Help in Vancouver

    I was diagnosed with Tourette Syndrome at age 6. I'm now 25. I haven't seen a doctor for anything related to TS since 1990. The pieces are finally falling into place and I'm discovering that I most definitely have a sensory integration problem! The past couple months have been unbearable. It's gotten to the point that I can barely leave my house, and only with unbelievable anxiety. I'm in the process of immigrating to Canada (living in Vancouver, BC), and I will never be able to hold a job like this when my work permit arrives. I can't do anything I used to enjoy, and my marriage is suffering. I need help, and I need it fast! My whole life is unraveling.

    However, I have no health coverage of any kind. And since the Canadian government won't let me work yet, we are living on my husband's extremely limited income. I don't know how to pay for a diagnosis or treatment. If I have to find a way to pay for this out of my own pocket, I need to know the most effective person to see so I can spend as little as possible in bogus doctor visits. So here's my questions:


    1) I heard of a DAN doctor in Vancouver named Ronald Greenberg. Does anyone know anything about him? Is he good?

    2) Where can I go to get a diagnosis of sensory integration disorder? Are there options other than a DAN doctor that would be better?

    3) Are there any resources here in Canada that can help me with costs? I can't use government funding of any kind or they'll refuse my immigration. Are there autism organizations or a TS organization that provides funding for low-income people to get medical care?

    4) Are there any websites that address SID specifically in adults? Everything I find is about kids and doesn't apply to me (interactions with playmates, academics, etc.).


    Thank you so much for your help! I'm losing my mind day by day here, and I really need some professional help!

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

    Default Help in Vancouver

    Many of our Forum members and staff are at the TSFC National Meeting in Montreal at the moment, and I would like to invite the input of some of them to address your situation.

    There is an active Chapter of TSFC in Vancouver, so you may want to contact them next week for some input on local resources.

    What is a DAN doctor? I am not familiar with the designation.

    I was under the impression that as a landed immigrant in Canada, that one qualifies for medical coverage after three months. Does this not apply in your case?

    Please check back on the Forum later for more info.

    Regards,

  3. #3
    Join Date
    Sep 2005
    Location
    Ottawa, Canada
    Posts
    736

    Default Help in Vancouver

    Like many conditions, the symptoms of sensory integration disorder may also occur in a variety of other syndromes or disorders. There's a pretty good article about this at http://www.healthatoz.com/healthatoz...n_disorder.jsp - note in particular that symptoms of certain learning disorders (I would guess especially the form known as nonverbal learning disability) and ADHD may be confused with SID. Some of the symptoms of nonverbal learning disability also overlap Tourette Syndrome so it may be significant that you received a diagnois of Tourette at an early age (and of course it is also possible to have a dual diagnoisis).

    As with anything else, it is a grave mistake in my opinion to self-diagnose. I don't know a great deal about specific medical practitioners in British Columbia but I would suggest that what you need is a referral to a neurologist to start and probably a neuropsychological assessment eventually (which is not covered by government health insurance and may well run you to $3000).

    Note there is also some controversy as to whether the diagnosis of sensory integration disorder is even real: see http://www.quackwatch.org/01Quackery...opics/sid.html:

    "Sensory integration" refers to the process by which the brain organizes and interprets external stimuli such as touch, movement, body awareness, sight, sound, and gravity. It has been postulated that certain behavioral and emotional problems result from the malfunctioning of this process. The term "sensory integration disorder (SID)" is used to characterize children who exhibit exaggerated sensitivity to sensory stimuli. The term was coined during the 1970s by A. Jean Ayres, PhD, OTR, an occupational therapist and licensed clinical psychologist who operated a private clinic and taught graduate students at the University of Southern California [1]. Ayres died in 1989, but the clinic she founded has been maintained [1].

    Parents of children alleged to have SID typically describe an aversion to loud noises, coarse clothing textures, and particular tastes and textures of food. Many of these children are also clumsy and have a history of late attainment of developmental milestones (i.e., were late to learn to walk or talk). Others exhibit coordination and fine motor problems. These children also tend to have behavioral and social problems.

    The methods used to treat these children include brushing the skin, using weighted clothing and special shoes, various exercises intended to improve coordination (?vestibular training?), and other techniques claimed to to ?desensitize? or fine-tune the patient?s nervous system. The therapies typically are expensive, involve months to years of weekly or more-frequent sessions, and imply to parents and children that there is, in fact, a problem that requires treatment.

    Few pediatric neurologists believe that SID is a real diagnostic entity. We note that children with a range of neurodevelopmental and behavioral disorders, including attention-deficit/hyperactivity disorder, autism, and anxiety disorders also have ?sensory issues? such as oversensitivity to touch. Many neurologists therefore feel that ?sensory symptoms? are a nonspecific indicator of neurodevelopmental immaturity, not a sign of a distinct disorder. Yet thousands of children are sent for these therapies by their parents, at no small expense. Aetna considers sensory integration therapy experimental and does not pay for it [2]. However, a few insurance companies do cover it, and some school districts provide it.

    Anecdotal evidence from parents is often used to support the existence of SID and the effectiveness of treatment. A review of the literature on sensory integration disorder reveals mostly poorly designed studies and flawed methodology. Studies with tiny sample sizes (as small as one patient!) are common [3-7]. Other studies investigate sensory symptoms in children with a serious underlying disorder such as autism [8-12], or mental retardation [13-16], and are therefore unlikely to be especially relevant to more normal children. Still other research assesses sensory therapies in the treatment of tangentially related conditions, like learning disability [17-23] or neuromotor delays [24-27]. In some cases where treatment appears to benefit, the therapies may simply be a calming influence on a nervous child. However, there are no adequate controlled studies either supporting the existence of SID as a distinct and definable entity, or clearly demonstrating the effectiveness of the therapies used for SID compared to no treatment at all [28-30].

    In my experience, children diagnosed with "SID" are simply very anxious and come from a family that includes others who suffer from an anxiety disorder.

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,870

    Default Help in Vancouver

    David,

    Thank you for pointing us in the right direction in connection with sensory integration disorder.

  5. #5

    Default Help in Vancouver

    I tend to agree that SID doesn't exist on it's own. I have severe sensory issues, but I come by them honestly, being both autistic and having TS!

    But, as kWhitlock said, she was diagnosed with TS as a child, and therefore it is quite likely that she also has the sensory integration issues.

    Steve, DAN stands for 'Defeat Autism Now', an organization intent on wiping out autism (and all autistics?). Most autistic people are highly suspicious of this organization, as they consist entirely of non-autistic people. They refuse to listen to any autistic adults, since in their opinion, if you are able to communicate and are intelligent you aren't autistic, and therefore what you say is irrelevant. Their 'autism community' doesn't include autistic people, but are parents and caregivers of autistic children. And they claim to know more about what these children think and feel than autistic adults (who obviously used to be autistic children).

    So, kwhitlock, I'd stay away from a DAN doctor. Just my honest opinion (which is obviously coming from an autistic adult). If you do some research on the Internet you may come to a different conclusion. Personally, I never just take anybody's word on anything important, but do my own research as well.
    German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

  6. #6

    Default Help in Vancouver

    Thank you for your input about DAN docs. I don't know much about them, but it seems that everyone on Harvard's Braintalk forum is going to them and they're having amazing results! I don't really know where to start looking for a doc, so I thought that was a starting place at least. I'm hesitant to see a neurologist or psychiatrist because I want to take a more natural approach to treatment. I've been on medication my whole life, and all it's done is give me side effects that make me just as nonfunctional as the problems the meds are suppose to be helping (like SSRI's - yeah, gets rid of depression, but after 2 weeks of not sleeping I wanted to kill myself anyway!). DAN docs have a reputation for using more natural methods of treatment, which is another reason I was considering one.

    To answer an earlier post, I do not have landed status yet. My immigration papers are still being processed. I should receive my work permit in February, and my PR status should be finalized about this time next year. I'm not sure what "landed immigrant means" but I'm assuming that's when I get my work permit?

    Also, it was brought to my attention that since I'm not yet a landed immigrant, any medical care I seek will be reported to immigration (and from what I understand they freak out easily about medical conditions). Does anyone know anything about this? Would seeing a doctor jeopardize my ability to settle here with my Canadian husband?

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

    Default Help in Vancouver

    Landing & work permit

    Landing is when you become a perm. resident of Canada and your package was processed completed and accepted.

    usually immigration will not allow you to work until most of the process is over and they require you to submit a "authorization to work" application with fee in advance of your landed status to work unless a company will sponsor you.

    Once you recieve notification that your application has been accepted and complete it usually takes three months before the ceremony and you must take the letter with all your original doc's with you when you sign.

    If you have not done your medical exam for immigration yet, then the process is not over and anything can/will be reported. You have to explain what you take and why during the exam.
    Check out the Immigration website for Canada Customs & Immigration and you will see more answers to your questions.
    PJK

  8. #8
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,870

    Default Help in Vancouver

    any medical care I seek will be reported to immigration (and from what I understand they freak out easily about medical conditions)
    I cannot imagine that CDN immigration responds to people needing medical attention is a draconian manner, however I do believe a medical examination is required by CDN immigration.

    For details on acquiring medical services on immigration Click Here

    If there are special circumstances in your situation, then a local immigration lawyer should be consulted

    I've been on medication my whole life, and all it's done is give me side effects that make me just as nonfunctional as the problems the meds are suppose to be helping (like SSRI's - yeah, gets rid of depression, but after 2 weeks of not sleeping I wanted to kill myself anyway!).
    Medications often need to be adjusted requiring follow up visits with one's physician and a plan for communicating progress and any adverse effects. Taking meds is not a one step process, instead dosages and even the actual prescription need to be modified.

    It's not unusual that one SSRI affects one person's neurochemistry differently from another's and arriving at the right dose/compound combination can take several months. All the while, one needs to be in constant communication with the physician.

    I don't really know where to start looking for a doc, so I thought that was a starting place at least. I'm hesitant to see a neurologist or psychiatrist because I want to take a more natural approach to treatment
    What are your concerns about consulting a qualified physician? The conditions you described require specialized and competent therapies, available only from competently trained specialists.

    You need to start off with a family doctor...a general practitioner. If you cannot locate one through referrals from friends, go to a teaching hospital in your area and go to the Department of Family Medicine.

    There you'll be assigned to a physician in training working under the supervision of a competent practicing physician. The services received in Family Medicine are usually superior to those received in private practice.

    You will likely be referred to either a neurologist or psychiatrist, and for the types of issues you mentioned, these are the health professionals that need to be consulted.

    Bear in mind that not all physicians have adequate training in Tourette, so in your conversations with your physicians, be sure to assure yourself you will be seeing physicians who have had training in and who have a professional interest in Tourette.

    I would strongly caution against searching for alternative approaches claim effectiveness without adverse effects. Those who promote many of these alternate therapies are experts at reading your concerns and promising what you want to hear, with no scientific competence.

    Ask all your questions here as our Forum members have a lot of information to share.

    Keep us posted on your progress.

  9. #9

    Default Help in Vancouver

    I don't have landed immigrant status yet. My application is being processed, so right now I'm here on a Visitor Visa. So there's no health coverage available to me yet. I've already had my medical exam for immigration (had it a year ago before any of these problems were realized or an issue). Since the medical exam has already been submitted, will I still be reported if I go see a doctor?

    "I would strongly caution against searching for alternative approaches claim effectiveness without adverse effects. Those who promote many of these alternate therapies are experts at reading your concerns and promising what you want to hear, with no scientific competence."

    The people I'm hearing this stuff from aren't practitioners of any kind. They are parents and patients, just like all of us. It's on Harvard's Braintalk Forum, which is a forum identical to this. It's just a bunch of people sitting around sharing experiences, good and bad. So there's no biased agenda going on. The site is hosted by Harvard, but none of the people on the forums even get treated at Harvard. So it's not a hidden agenda by Harvard. And the members aren't screened to find people with one certain view or experience. Anyone is able to join the forums.

Similar Threads

  1. Trouble finding good help in Greater Vancouver
    By wifeofTS in forum Diagnosis and Treatment of Tourette Syndrome
    Replies: 12
    Last Post: January 9, 2013, 12:40 PM
  2. Family Doctor In Vancouver Area?
    By Glad in forum Diagnosis and Treatment of Tourette Syndrome
    Replies: 1
    Last Post: January 27, 2008, 11:39 PM
  3. Hi from the Comox Valley in BC--that's on Vancouver Island!
    By valmac in forum New Members: Introductions
    Replies: 3
    Last Post: October 10, 2006, 11:43 PM
  4. Vancouver BC doctor to recommend?
    By sue in forum New Members: Introductions
    Replies: 5
    Last Post: July 13, 2006, 09:45 AM
  5. Advice in Vancouver
    By folland in forum Diagnosis and Treatment of Tourette Syndrome
    Replies: 2
    Last Post: April 30, 2005, 08:32 PM

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •