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Thread: *HELP* Trying to Support and Understand (My husband and my Daughter)

  1. #1

    Default *HELP* Trying to Support and Understand (My husband and my Daughter)

    Hi Everyone

    I joined this form because my husband has TS and we have a one year old daughter together. I have two questions to ask.

    First Question

    My Husband was diagnosed with TS at the age of 9, he was given medication which he stayed on till he was 18 then choose to take himself off once he could legally make his own medical choices. He has facial tics and the other tics with his stomach and hands. He rarely clears his throat anymore is maybe only comes around 4 times a year. So physically he is getting better as the years go on. My concern is the emotional and mental part to TS. Just a few months ago I had a presentation in my Mental Health and Illness class. I chose to do my topic on TS. Choosing this thinking I know everything about but learned way more then what I knew. Between the depression, anxiety and OCD it made me wonder about my Husband. He has never been open about his TS, never really likes to talk about it and never connects it to the other things personally going on for him. Lets just say I know more about TS then him when it comes to the facts. He goes through these moods which looks like depression. He gets quite, doesn't really feel the need to be part of family activities. He is extremely hard to wake up in the mornings. The sleeping thing has always been an issue which is making me pull my hair out. I believe he has OCD but once again he wont talk to me about it. He fights me on anyways and always makes the tiny things a struggle like what brand of milk we should buy. I will ask him a question and he will just push it aside. I can't figure out what is TS and what is him?! I guess my question is... how can I support someone who doesn't want it?


    Question 2

    Our daughter just turned one last week and I know its impossible to diagnose TS at that age but she has been doing a lot of stuff my husband does which is weird. My husband has this thing where he has to genitally touch his arm, which she has started doing. He also randomly sucks on his tongue a way which she has started doing too. He believes she will have TS just because he relates those things to his TS but like question one...once I start asking him question such as "When you have to touch your arm, do you get the same urges as the facial tics?" or "when you suck on your tongue do you have to do it or is it a choice?" So my question here is... is there a chance she will have it?

    I know this is a long post with big questions but any answers would be awesome!

    Thanks!

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,945

    Default Re: *HELP* Trying to Support and Understand (My husband and my Daughter)

    Welcome to the TSFC Forum JJDM! Thank you for joining us and for your compassionate support for your husband and daughter.

    It's not unusual for people who may not have received support as children with Tourette, and who might have self esteem issues in connection with their tic expressions to be reluctant to openly talk about their concerns. If he was made to feel embarrassed, or perhaps ridiculed or even bullied as a child because of his tic activity, he might feel apprehensive to feel comfortable to be open about it.

    One of the best ways to help your husband see his own Tourette in the right perspective, which is that between 1 and 3% of the general population are thought to have some traits of Tourette, and that he is not alone, would be to meet other families already living with the disorder.

    If there is a support group in your area, you may want to attend a session together.

    As you probably are aware, the co-morbid (associated) disorders that frequently accompany a Tourette diagnosis, like anxiety, OCD, ADD or depression are much more easily treated that the actual tic expressions.

    You didn't mention the nature of the medication your husband was prescribed as a teen, whether it was to try to suppress tics or to treat an associated disorder. Would you happen to know the name of the medication and why he chose to discontinue treatment?

    The concern you expressed about difficulty waking up, I believe should be investigated by his physician. There may be sleep difficulties preventing good quality sleep that can be investigated in a sleep lab and appropriate treatment could be offered.

    With regard to your little girl, you may want to speak to her pediatrician about it, but it may be a simple case of imitating Dad with no potential for Tourette.

    Genetic transmission is complex and uncertain, and the odds are pretty much 50-50 for a parent with Tourette to pass on the vulnerability to their child.

    Many children simply experience transient tic disorder, and nothing more evolves. It's premature at one year old to draw any conclusions.

    You may want to pick up a copy of the TSFC publication Understanding Tourette Syndrome, A Handbook For Families, that addresses many of the issues you have raised.

    Overall, how is your husband dealing with his Tourette at this time, at work, in the home and his general quality of life with his Tourette?

  3. #3
    Join Date
    Jul 2011
    Location
    Toronto, Ontario
    Posts
    753

    Default Re: *HELP* Trying to Support and Understand (My husband and my Daughter)

    Hi jjdm,

    Acceptance of TS and its associated disorders can be a bit like a roller-coaster. Sometimes, you're going up-hill and making progress, and other days are not so good, and your husband could go into one his moods that "looks like depression." The TS is part of who he is, it should not define him, but as his spouse you should support him in the symptoms that he does demonstrate. You can continue to provide him with information that you are learning in your studies, and hope that he's listening. However, if he doesn't want the advice, pushing it on him is not going to make him listen. Especially if you suspect he has OCD.

    Family activities can be overwelming and if your husband has sensitivity issues to noise or being touched, he may avoid them for neurological reasons. Many people are hard to wake up in the morning, and I know of people with TS who have multiple alarm clocks to help them wake up. A good trick is having the alarm clock far enough from the bed that he needs to get up to turn it off.

    I think it's much to early to try and diagnose your daughter. She's a baby, and babies mimic the people around them. That's how they learn. If she is duplicating some of your husband's tics, she does not realize they are tics and at this point is just copying behaviour she sees, just as she might duplicate your smile when you smile at her. If these things start to impede her ability to concentrate on something or repeat too many times for just a cooincidence, start a journal of symptoms with a description of the tic, the day it started, the number of times a day, and a day when it waxed or disappeared. Then discuss the journal with your family doctor to see if there is any reason to be concerned.

    I hope I answered your questions.
    Tina
    Tina, Forum Moderator, TSFC Staff Liaison

    TSFC Homepage
    TSFC Membership

  4. #4

    Default Re: *HELP* Trying to Support and Understand (My husband and my Daughter)

    Hi Steve

    Thanks for responding to my post.

    He use to take Wellbutrin and Risperidone but from my understanding when he went to Toronto and was diagnosed with TS that was when he was prescribed the medication. The only thing that didn't make sense to me was they kept him at the same dose for the almost 12 years he was on it. He choose to stop using the medication because he didn't like the feeling he had well being on the medication. I have talked to him about going to the doctors and he has agreed that he should go but the TS doctor is about 2 hours away in Toronto. I am defiantly going to look at getting the book you suggests.

    Thanks Steve

  5. #5
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,945

    Default Re: *HELP* Trying to Support and Understand (My husband and my Daughter)

    JJDM,

    Risperdone is a medication frequently used to help suppress tics. It's used "off label" because it has been found to work for many people with Tourette, though originally it was indicated as an anti hypertensive to treat high blood pressure.

    Wellbutrin is prescribed to treat the illness of depression.

    Like any medication, each is tolerated by many people, but also can produce side effects that some people cannot tolerate.

    As I said earlier, treating associated disorders is generally easier and more effective than tic control with medications, so now that your husband is an independent adult, with more experience and better able to communicate his needs and concerns to his doctors, it might be well worth re-visiting his doctor.

    Depending on how his tics affect his ability to function, he may choose, as many people with Tourette do, to not try suppressing tics with medication, but rather focus on treating the associated disorders. There are many more options with medications that are very well tolerated by most people.

    To deal with his tics, he may want to investigate the treatment that has been found to be effective without the use of medications. The treatment is called Cognitive Behavioural Intervention for Tics (CBIT). Working with a practitioner trained in CBIT, he would learn to recognize the urge to tic called the premonitory urge, and convert, suppress or redirect the urge.

    If you do a search for the term CBIT here on the Forum (upper right corner search box) there are numerous posts and articles describing the treatment.

    The National Office of TSFC can help you locate a practitioner trained in CBIT.

    Do keep us posted on your progress, and invite your husband to join us here on the Forum. If he would like to join the Forum, have him register separately so we don't confuse who we're communicating with.

  6. #6

    Default Re: *HELP* Trying to Support and Understand (My husband and my Daughter)

    Hi Tina

    When you talked about the family activities it made sense. He is not a big fan of being touch, we don't cuddle as often as the average couple. He doesn't like anything evolving close contact with people unless he is playing sports or if he is with the kids such as holding them. He tells me he doesn't have OCD but is it possible to have a small case of OCD, he has this obsession with his hands he describes it as if the skin between his fingers are closing in on each other and he has to open his hands up wide to get ride of the feeling. I think the touching thing is one of the hardest parts of his TS when it comes to our relationship. I am naturally a touchy person and I have to teach myself to not be has touchy because its makes him uncomfortable.

    I defiantly understand about the roller coaster ride. We have the ups and downs like most relationship but sometimes its a little bit harder especially because he is stubborn! He doesn't let his TS get in the way of his daily life we have friend talk about how they never see the tics anymore. Only times I see his TS act up is if he is stressed or extremely excited.

    Thanks for the information defiantly learned a lot!

    ---------- Post Merged at 03:47 PM ---------- Previous Post was at 03:38 PM ----------

    Hi Steve

    I have heard of CBIT during my research for my presentation. I will defenelty look into it more and see if there are therapist in our local area who know about CBIT. I do remember him telling me about how his mind feels like a rat race and everything is constantly going. So this might be a very positive solution! I will talk to him about signing up for the forums, I believe he could get a lot out of this site, reading about others situations and maybe be able to relate.

    Thanks Again!

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