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Thread: Western Hospital....bad experience & Questions

  1. #1

    Default Western Hospital....bad experience & Questions

    Hi,

    My daughter is 11 years old and we have suspected she has Tourettes since January of 2007, when she started humming nonstop and chirping in class. Her symptoms were better at school this past school year, though I am still seeing tics at home.

    Looking back, she has had some symptoms since she was about 2 years old, we just didn't recognize it at the time. She would chew on her arm and leave a big bruise (from age 2 until as recently as 7 months ago), chew on her clothing, hair, etc..., and her first phonic tic was "abeesha!" when she was at least 2, maybe even 18 months old.

    There have always been some sounds/faces she has made. She also has hip thrusting, limb jerking, etc... and seems to get stuck on words at times i.e. "Please pass the butter. Butter, butter! Butter, butter, butter, butter!"

    She also has some degree of social phobia, which mostly presents as her having extreme difficulty answering questions in a formal setting i.e. wtih doctors, or even at school unless she is 100% sure she has the right answers.

    She has been diagnosed with ADHD at Chisholm in Oakville.

    I waited 18 months to be seen at Toronto's Western Hospital. We FINALLY were called for an appointment a couple of weeks ago, and on the Tuesday were offered an appointment for that Friday!

    I was totally amazed that after all this time we would get called jsut days away. I couldn't go then but took her in the following Wednesday.

    When we were seen at TWH a couple weeks ago the person interviewing us was a psychiatrist....I had expected a pediatric neurologist. Is it typical to see a psychiatrist instead?

    The psychiatrist had JUST been hired (hence the sudden availability of appointments). I noticed she had a "Tourettes Syndrome" textbook on her desk...which made me wonder if she is not only newly hired, but also is new to TS.

    She completely took a psychiatric approach to everything...she began by asking about my trauma history (I have PTSD which i disclosed on the forms since they asked) and wanted all kinds of details about what kinds of abuse I'd experienced, who my perpetrators were, how old I'd been, etc... which I sort of didn't think was totally relevant to why I was there but I just answered her questions.

    My daughter, because she has such difficult answering questions, would only say "yes" or "I don't know" to anything she was asked. I had told the psychiatrist that this is what she would do, it is part of the difficulties she has.

    To be fair, my daughter's symptoms are mild. She has tics pretty much every day but most people won't notice them, and occasionally I have thought they were gone but then they resurface again. I also sometimes realize I have stopped noticing some of the faces she makes - a friend pointed out to me that my d was making faces the whole time we were together and I hadn't noticed at all! LOL

    She does NOT for whatever reason, have any tics during assessment appointments. She tends to have them more at family gatherings, or during times she is more high strung.

    During assessments she sits looking totally terrified and won't talk.

    Anyways the psychiatrist we saw had a thick accent and apparently my daughter did not always even understand her. She also seemed to have odd and inflexible opinions i.e. my d had a stiff neck and the dr said to me "it's because of going in and out of air conditioning, it makes your neck stiff". I thought that was odd and pointed out that we don't HAVE air conditioning but she reiterated that air conditioning causes it, and she has had a stiff neck herself because of it.

    She said in the end that she "doesn't know" if my d has TS or not. That it "might" be Tourettes, or "it might just be that she just wants to annoy her teachers!" Or, that "because she can't talk about her feelings" she makes herself have tics or act like she has tics, hoping that someone will notice something wrong...so she can have attention.

    She said these things IN FRONT OF my daughter. Afterwards my d said to me "Why would I CHOOSE to be this way?"

    I was too shocked and upset to respond much in the moment...I could not believe that I had waited 18 months to have the assessment go this way. Had she said her behaviours don't fit with the TS pattern, or that she wasn't sure and needed to consult with someone....I could have acccepted that no problem.

    if she is brand new to TS I can accept that too though it's annoying to wait 18 months for a specialist and see a newbie...but then again she could surely consult with someone in an unclear case.

    I did phone afterwards and left a msg as well as emailed asking her to make sure she read the Chisholm report...she seemed to assume that because my d would not talk to her, that she is having "emotional problems". She alluded to her being depressed...my d talks nonstop at home, laughs a lot and is a little social butterfly. She is NOT depressed.

    The Chisholm assessment - part of which was done using non verbal assessment measures (my d wouldn't talk there either!) found her to have high self esteem, to be confident socially though slightly less so at school (she does well in school), and to feel secure and loved, and like she is a respected member of her family.

    She also has NEVER been a child to act up or get in trouble at home or at school other than for ADD type things (losing things, forgetting things, not paying attention) or for "making faces" or being "too noisy" before it became apparent she is having tics.

    I do NOT think that a child who is too scared to participate in class would suddenly start humming nonstop, chirping, trilling, etc... just in order to "annoy her teachers" or to "get attention".

    I emailed all of this (kindly, politely, respectfully - but pointing out my concerns and some discrepancies) and have had no response whatsoever.

    Am I overreacting? Has anyone else had this kind of response?



    After waiting 18 months for this appointment, I'm not sure what to do next.

    She did say that it IS possible it is TS, and seemed to be saying it was TS "if" isn't emotional problems or being faked, basically (planned out since age 18 months - 2 years?)...and she said we can come back any time...but the thing is it is SO difficult for my d to go to those appts and I don't think she will be any more communicative the next time, and I don't see the point of putting her through that again.

    She said that she wants my d to get a book and mark down any time her teacher tells her "you were doing X" and she had not been aware of it....and when this has happened 5-6 times in a period lasting at leasts 30 minutes, to come back again.

    The thing is that ALREADY happens, I already see times like that...but I don't point it out to her as I'd read that is not helpful.

    I said this in the email, that i"m not sure what more information she thinks will surface if/when we come back and that she already has tics as frequent as that sometimes...but I got no response.

    I also am under the impression that a child can have tics and be aware of them. Is this incorrect? Often my d IS aware but doesn't know why she is doing it. Other times it's clear she is unaware - she will get angry or upset when people say she made X sound and say "I don't even know HOW to make that sound!" and insist they are making it up. One day she suddenly started singing at the top of her lungs in class, during a quiet circle time, and when the teacher told me later (thinking it was funny) my d was outraged and insisted the teacher was "lying".

    None of it appears to bother my d and the dr said she would not medicate her as her symptoms are mild....but still I'd like to know one way or another if it is TS or not, and am not sure if I am being unreasonable.

    Any feedback/suggestions would be much appreciated....

  2. #2

    Default Re: Western Hospital....bad experience & Questions

    Welcome Crowland!

    I am not a doctor , only a parent of a 14 year old boy with TS+, but I would strongly recommend you look for another doctor, one who has experience treating TS. This could be a neurologist or a psychiatrist.

    Contact the TSFC www.tourette.ca for a listing of professionals in your area. I would also recommend printing out the checklist on the site and filling it out for your next appointment with an experienced individual.

    While you are waiting for a diagnosis you could also look into a psyhcholgist if you so choose that can begin to work with you and your daughter on some of her issues. You don't need a diagnosis in order to start helping her with some of her symptoms. Psychologists can often be seen in private practice where there will be a much shorter waiting list. You will have to pay for the services, however your health plan may cover some of it. If you choose to work with a psychologist make sure they are experienced with TS, OCD, ADHD patients.

    We have been seeing a psychologist for Cognitive Behaviour Therapy since my son was in kindergarten. This has been instrumental in helping my son deal with his anxiety issues and has also helped us as parents learn different ways to parent our son. We have also been seeing a psychiatrist in a TS clinic for the same amount of time. The two together have been a good mix for us. Incidently our son was not diagnosed until late grade 3 but we had begun to work on his issues long before that.

    Please keep us posted.
    Last edited by mom2TSguy; August 19, 2008 at 08:16 PM.

  3. #3

    Default Re: Western Hospital....bad experience & Questions

    Thank you so much Patti, I have emailed them to see if they can send me a list of practitioners...hopefully I can find someone I can get in to see sooner.

    I had had to fill out tons of forms for the TS clinic...I just wish now I had made copies of them...they did ask the kinds of questions that are on the www.Tourette.ca...I just feel like the concerns were dismissed as "emotional problems".

    One thing that occurred to me tonight when I was talking to my friend about it...my daughter has such a lack of facial expression during appts like these...the doctor at one point said "You are a very pretty girl. Do you know you are very pretty?" [I found this a bit odd in itself, but...whatever].

    My daughter looked at her, totally deadpan, NO facial expression, no hint of a smile, maintained eye contact with no noticeable flinch or change at all and said "Yes." The doctor asked "have other people told you that?" and she said "yes" and again NO change in expression.

    i was totally astonished by that, because I would have thought my daughter (like most people) would feel slightly uncomfortable, or would laugh or at least smile, drop her eyes a bit...especially given how shy she is. It just seemed weird.

    Something clicked for me tonight and I realized it is not just that she doesn't answer the questions in appts....she has a complete and total lack of facial expression...she presents as being flat in affect, which of course feeds into the idea that she is depressed.

    But that is so NOT her. Usually her face is SO expressive, constantly changing, almost never stays still whether she's smiling, making faces, or just whatever but the last thing she is is not expressive in her face.

    And I realized I think she is holding herself SO rigid during appointments like this....something that I've always been confused about is that she NEVER has tics during the appointments. She tic'ced on the way to the appt, she had tics afterwards, but none DURING the appointment and I knew in advance that she just wouldn't.

    It occurred to me that I think she is holding herself so rigid that she is suppressing them. Whether she is consciously working to hold them back or she is rigid because of anxiety and the tic suppression is a byproduct, I'm not sure.

    Carol Ann

  4. #4

    Default Re: Western Hospital....bad experience & Questions

    It is very very common for individuals with TS NOT to have tics during appointments. An experienced doctor would know that! What I have heard some people do is videotape their child when they are unaware and show that to the doctor.

    Something to think about.

  5. #5

    Default Re: Western Hospital....bad experience & Questions

    Thanks so much, this is exactly what I was thinking - that I should try videotaping her when she doesn't know. She doesn't tic continually so it might be hard to get the tics on tape but I can definitely get her being her usual happy animated self so that they can see she is NOT depressed and this silent stiff child they see in front of them during assessments is just not who she is.

    The psychiatrist did not comment that my d didn't have tics during the session and I suspect she wasn't surprised by that...but I think she mistook the lack of facial expression as being flat in affect, as she seemed insistent that my d was depressed or having emotional problems.

    It didn't help that she said that *I* had indicated on the forms that she is depressed. I insisted I would never say that and she kept arguing that I HAD, so I asked her to read to me the item so that I could figure out what I had intended.

    It was something like "my child experiences times of sadness or depression" and the choices were things like "never", "occasionally", and "almost always". I put "occasionally" because yes, like anyone else she has times of feeling sad - if she can't go to the dollar store with her friends she may cry and become sad about it, and occasionally she does get teary...but mostly since puberty and it's well in range with what other girls her age are going through. <sigh>

    I've decided to write a letter to the WH's patient relations department and outline what happened in the interview. It would be one thing if I'd gone to my family doctor or someone who did not specialize,and have this happen....but I waited forever and went to the "oldest and largest" Tourettes Clinic and IMO I saw someone who seems to be brand new to TS. While I could live with that (everyone has to start somewhere) if she would have said she wasn't sure and had to consult with someone...she didn't say that, she just said she didn't know, suggested my d had emotional problems, and that is how it was left - no follow up or further exploration booked though she did say we can call and come back at any time...but she would be our doctor now and I just don't see the point and certainly don't want to put my d through a similar interview again...all those things she said about emotional problems and maybe trying to get attention or trying to just annoy her teachers, she said right in front of my daughter.

    Carol Ann

  6. #6

    Default Re: Western Hospital....bad experience & Questions

    I hadn't sent my letter of complaint in yet, and finally this morning received an email back from the psychiatrist. I guess she hadn't known how to log into her email there yet (she is newly hired).

    She suggested I come in and talk about it in person and bring my daughter in for a play therapy session so she can hopefully observe her better...so I've booked an appointment for Friday morning and will see how it goes...

    Carol Ann

  7. #7

    Default Re: Western Hospital....bad experience & Questions

    Hi Crowland,
    I read your posts about your experiences with psychiatrist and I thought I'd put in my 2 cents. We originally took our son (then 11) to see a private psychologist because of anxiety which turned out to be OCD. He also diagnosed him with Tourette's - he had tics but we hadn't known he met the criteria for Tourette's. The psychologist has been AMAZING in all aspects. I would highly recommend finding a child psychologist. I have no experience with psychiatrists but I have heard that they tend to take a pharmaceutical approach as a rule. I hear again and again on this forum that finding that one professional - be it psychologist, neurologist, psychiatrist or fam. doctor - made all the difference to their kid and family. My son's tics are no better but his OCD is and we are all very accepting of the tics and can deal with it. So keep trying! Kristin

  8. #8

    Default Re: Western Hospital....bad experience & Questions

    thanks kristin,

    it is clear to me i need to find someone else.

    i feel so despondent. she said today she does not feel it is TS because my d did not have tics during the session!

    i said i believe i've read that that is the case for many kids with TS but she said no, they might be able to hold them back for 30 mins but not for 50 mins (how long she saw my d).

    my d can sometimes go hours without having a tic, sometimes i think maybe even a day, unless i just don't notice them. but then when they start tehre is a big burst of them and she may have lots of different tics that day.

    she said she feels it's just the ADD and said "the noises are probably because kids with ADD are just noisier than other kids". Well yeah, no duh, but do they usually chirp?

    she said probably my d just makes faces to get back at other kids after they make a face at her, or something like that. i said well she isn't making them AT anyone, she can be sitting there alone making them and not know anyone is watching. And that sometimes she doesn't know she is doing it.

    She said if it were tics, she woudl know she was doing it.

    Interesting because last time she told my d to come back when a teacher told her 5-6 times in half an hour she was doing something "and you didn't know you were doing it".

    I wondered at teh time as I know that people with TS CAN be aware of the tics...but she seemed last time to be using a lack of awareness as a criteria for identifying it as a tic. Then today she said totallly the opposite.

    I am going to go back to my family dr and ask for another referral I think.

    She also wants to put my d on meds for the ADD which last time she said she would not want to medicate her.

    I am so frustrated. I know she is not doing these things for attention or doing them "at" anyone and I don't think it's true that kids "always" will have tics during a dr's visit.

    Carol Ann

  9. #9

    Default Re: Western Hospital....bad experience & Questions

    Hi Carol Ann,
    Everything you say about this doc makes it clear that she has little or no experience with TS. My son often goes the whole school day with few or no tics then has a big tic fest at home. Others on this forum have expressed frustration with getting their own TS diagnosed, precisely because they don't have tics in the doctor's office. If you are going to medicate your daughter for ADHD, make sure the doc has a true understanding of TS, because many of these meds exacerbate tics (as you probably know). Maybe you can see if your family doc knows of a child psychologist who deals with ADHD, TS and OCD. Good luck! Kristin

  10. #10
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    Default Re: Western Hospital....bad experience & Questions

    Carol Ann
    Are you in the Oakville Area? My son is 11 and was reciently diagnosed with TS+ and we have FINALLY found a great doctor here in Oakville. He's not a TS specialest he's actually an ADD/ADHD specalist but he is very knowledgable about TS. His name is Dr. Handelman and he has an ADHD website. You do need a referal to get in to him and just because you have the referal it doesn't mean he take you on but it's worth the try!

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