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Thread: mum to l'il twitch

  1. #1

    Default mum to l'il twitch

    My wonderful little 7 year-old daughter was diagnosed with Tourette's two weeks ago. I feel sad, relieved, scared, guilty. She has been extraordinary her whole life. At four, the doctors thought she may have oppositional defiant disorder because she was a very, very difficult preschooler. By 5 years facial tics had started and we were told she probably had a transient tic disorder....and maybe some attentional issues... as well as a difficult temperament. Seven months ago her tics began to change and become more complex and vocal. I knew we were about to visit another planet the day she told me she didn't like herself very much. I said...what!? You are the coolest second-grader I know....She said she didn't like herself because she kept wanting to say a bad word. In fact she couldn't stop herself from saying a bad word. I wracked my brain..."stupid? dummyface?" No no Mum....the f word. And I said it all day long at Nana's house." I gave her a hug and picked my heart off of the bathroom floor and told her it would be okay. A phone call later to Nana was informative. "oh" Nana said. I just thought she was learning a french song with all the fa fa fa fa fa she was repeating!!!
    That 's my girl.

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,841

    Default mum to l'il twitch

    Welcome to the TSFC Forum!

    >>>I feel sad, relieved, scared, guilty<<<

    One can understand your mixed emotions, and learning your cherub has TS is always a surprise.

    However there is no need to feel guilty as there is nothing you did wrong.

    When I was diagnosed, I felt relief, because I finally knew I was not alone, and neither are you. There are wonderful people here who can provide you with information and insights plus perhaps some local support.

    Check the list of TSFC Affiliates to see if there is one near you.

    What treatment strategies has your physician recommended for your daughter?

  3. #3

    Default mum to l'il twitch

    Sorry it has taken me so long to reply. I appreciate that you responded to me. She has started both cognitive behavioral therapy and clonidine. She is experiencing dizziness and headaches but few other side effects. She has been on it for about six weeks and the dosage has been gradually increasing. She has no motor tics right now at all which is terrific because she had been hopping and opening her mouth really wide over and over again for at least a month prior. In addition, she was showing a repeated stepping sequence (OCD). However, we are experienced enough with this now to know that it could just be the natural waxing and waning of her condition and not the meds that are stopping this. We were heading to the library two nights ago and she started swearing repeatedly in a flutter. I have only heard her do this once before and interestingly, it was when we were heading to Chapters! Bookstores....? mmm!! She enjoys the relaxation techniques the psychologist is teaching her. She claims she is going to be the "boss of her tics". I am so proud of her. Unfortunately, we find an interesting rythym with her. When her tics are not present, her behaviors and mood are unpredictable. It is as if she can only hold one thing together at time. Something has to come out!! She either tics and is calm and pretty compliant or she has no tics and is extremely volatile. Either tics... or anger and "I cant! I can't help it!" She breaks my heart every day. She is exhausting when she is like this. I prefer the tics!!! I know you are right. I should not feel guilty. I did not cause her to have TS. However, I shouldn't get so frustrated with her. I need to be more patient. She is more difficult to parent then my three other children combined. What do you know about the success of this med and cognitive beh therapy with a child of her age? I am reading the bulletins for more info. Thanks, Redzmum

  4. #4
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default mum to l'il twitch

    I too am a Mom of 4 and they are all boys. I have TS (ADHD/OCD) and my oldest is 13 (diagnosed at 9)and my second is 7 years old and just recently diagnosed. I am like you, I prefer the tics... suppression is very difficult. To help people who do not have TS understand or be able to relate, I will often use the analogy of holding back gas. The more you hold it the more your stomache hurts and then the worse it is when you let go :oops: . If you just let it go when you get the urge it is probably SBD (silent but deadly) and then the fallout is less than when you hold it back because the potential for it to be silent is lost... the analogy usually gets a laugh but they get the point...

    With our oldest we totally encouraged "tic release" because when he was relaxed, I was relaxed and when we are both relaxed... the whole family atmosphere is a much better place to be. Teaching our TS kids early that "it's okay" usually transfers into an earlier acceptance and positive self-esteem. Many parents have reported that their kids can self advocate earlier when they have grown up with freedom to tic openly.

    We were heading to the library two nights ago and she started swearing repeatedly in a flutter. I have only heard her do this once before and interestingly, it was when we were heading to Chapters! Bookstores....? mmm!!
    I was just thinking that perhaps she perceives both as being places where she needs to be quiet... her subconscious knows this might be a problem and that could increase her stress therefore increase the vocal tics.

    The TSFC has books to help understand Tourette Syndrome. Have you checked the list of TSFC Affiliates to see if there is one near you?

    I was only diagnosed through my son's diagnosis and it took me about 7 months to get the nerve to contact the local chapter. Since then it has been a huge part of our lives. The support you get from others going through what you are going through is a big part of the healing process and developing the coping process.

    Stay connected with us and you'll meet wonderful people who will offer help and info.
    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

  5. #5
    Join Date
    Apr 2005
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    Ottawa, Canada
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    5,841

    Default mum to l'il twitch

    Redzmum,

    Thanks for the update! For your further reference there is a discussion on clonidine resources CLICK HERE if you would like more insights into the medication.

    It would be interesting to hear about the relaxation techniques your daughter has been learning from her psychologist.

    Would you care to share them in the Treatment Options discussion section of the Forum?

  6. #6

    Default mum to l'il twitch

    Redzmum
    I think that CBTherapy is great and wish that I had it when I was young and now too. Low self esteem is a big problem for many growing up with this syndr. I'm still dealing with mine.
    Check out the site Steve sugg on Clonodine. All meds have side effects and its a good :idea: to fully read up on any b4 taking.

    Best wishes :P

  7. #7

    Default mum to l'il twitch

    Thanks for responding to my posts. Sorry it takes me so long to reply. I only get a chance to look here every couple of months or so. It seems as every new thing happens with my daughter I need to process a bit before I can really talk about it! Janet: I am all for letting her tic as she wants at home or in "safe" environments. We are constantly expressing acceptance of her sweet little self. Your analogy is priceless! Yes, I am almost to the point of contacting our local TSFC affiliate. I am not sure why I haven't yet?? The doctor wants to begin investigating whether she also has ADHD. I am pretty sure she does. Thats okay. We can tackle that next!!!
    Steve: Thank you for the information about Clonidine...and your support! Yes, I will share the cognitive behavioural relaxation suggestions on the treatment options board. Scottx: I am really happy with what my daughter is learning through the cog beh therapy. She is learing to be the "boss of her tics" and has even named them. "Jeremy the Germy Tic" sometimes comes knocking on the door to play with her. Sometimes she wants to play and lets him in. Sometimes it is just not a good time to play and she tells him to "Scram". She drew some pictures of him. She thinks he is cute...but kind of annoying at times. The psychologist at the hospital taught her how to use the photocopier so she could make a few copies of her drawings. That day she distributed pictures of Jeremy to many people in her family. I think the psychologists called this "externalizing". She feels good about it. I am hoping as this sort of work continues she will maintain a high self esteem for years to come! As an update: She is now on 4 doses of Clonidine a day. Our doctor has never prescribed a higher dose than what she is on now. She is sleepy. A couple of weeks ago she started swearing under her breath all day long. It is no longer in a flutter, it is the whole word. Eeek. However, all motor tics are completely gone. I like this because she would physically hold her head to try to get her head tics to stop before. She actually has come a long way. She also repeats phrases over and over: I can't, I'm scared, I'm bored. All phrases that in the past we have discouraged her from saying. Perhaps any word(s) she perceives as taboo becomes her "swear". Anyway...the adventure continues!!!! Thanks to all.

  8. #8
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default mum to l'il twitch

    Welcome back Redzmum,

    Taking time to process is a good thing. I'm glad to hear things are sorting themselves out. Sometimes it's hard to figure out why we do not make contact for support, most of the time it's because we often feel "I can handle it" ... that is how I felt. Reality was, I was handling it but how I was handling it was an opportunity. The minute I made that first contact I felt relief because I was ready then to move forward.

    We often have parents contact our local chapter and ask questions and then we don't hear from them again. That happens! When you're ready, you'll make contact and you'll be ready to share. Plus there is the added benefit of an occassional night out with people who actually can relate.

    Good luck and I looking forward to your participation whenever you can jump in. take care
    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

  9. #9
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,841

    Default mum to l'il twitch

    Redzmum,

    It's good to hear from you again. Please don't be a stranger and if you can, come back sooner to keep the conversation alive.

    It would be interesting to explore and discuss your daughter's vocal tics.

    Looking forward to hearing from you again!

  10. #10

    Default mum to l'il twitch

    I hope I didn't send this twice!
    Yes, wow..I am back again so soon. Yesterday my daughter and I were at the children's hospital for her bi-weekly cbt which is doing wonders for her self esteem and preparing her for the start of school again. Today we had an appointment with her psychiatrist who spent an hour and a half with us!! Tomorrow we go to the cardiology dept for another ecg. In a month there will be a case conference with her pediatrician, psychiatrist, psychologists, cardiologist, teacher and us. They would like to discuss a possible diagnosis of ADHD, her potential heart condition, meds, therapies and strategies for school. I feel really happy about it. She is getting excellent medical care. TENEX is the drug they were discussing. We are going to hold off for now to see whether Clonidine becomes effective again. I guess she can wax and wane even on the meds. I'm going to look into the bulletin board posts that discuss ADHD and TS next. The psychiatrist really STRESSED CONTACTING MY LOCAL CHAPTER OF TSFC. She said 'now is the time'. I will tomorrow morning. Thanks...Janet! Steve: My daughter has three types of vocal tics: simple sounds she repeats over and over like hisses, swallow sounds; coprolalia ("sexf--k" is her made up word of choice these days. She says it all day long. It sneaks into sentences, begins or follows a statement, or just repeats all on its own.) I understand it is quite rare to do this. (Trust my little darling to go big or go home! If she'g going to have TS, she's going to do it right!! :D ) Her most recent vocal tic is the repeating of phrases: "I'm scared" or "I'm bored" or "I can't". She tells me she can't stop saying them. We are a little concerned about how the sexf--k is going to go over at her catholic school! She can disguise it well at this point so maybe good ol' Father Joe won't have a heart attack!

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