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  • Women's Issues

    Adult women often share they have issues that they feel are due to having TS and being female versus due to being just female or just having TS.

    Examples specific to females would be the decision to have children; or perhaps stopping medications when you discovered you were pregnant; or even the side effects of meds affecting sex drive.

    The TSFC has a committee called the Adult Issues committee and one of their projects this year is to explore common issues amongst the adult population.

    Have you ever felt that way? If you are willing to share please let us know what challenges you have faced. What issues have you dealt with as a female that your male counterpart probably hasn't had to deal with?

    Looking forward to hearing from you!
    Janet

    TSFC Homepage

  • #2
    Women's Issues

    Hi Janet,

    Well I don't have Tourette Syndrome, my husband and son does. I had my son before we knew that there was anything wrong with my husband therefore I didn't know that there was a possiblity of a genetic problem.

    I want to have another child!! However, am I willing to take the risk of having another child with TS?

    My husband doesn't worry about these issues! He feels that he has TS and he is successful so big deal.

    This is something that I worry alot about. Steph

    Comment


    • #3
      Women's Issues

      Hi Everyone!

      I ahve always thought about having children and whether I would like to or not. I am diagnosed with moderate to severe TS and I always wondered if I had a child if he/she would also have it and how severe it would be. Turns out my husband has two children so I'm not thinking of having any kids because we already have two.

      If I wanted to have kids though, I wouldn't let TS stop me. It's not a disorder that would ever stop anyone from achieving his or her goals, although for children, there may be some teasing from the other kids and that can be quite hurtful.

      However, already having lived through most of my life with TS, I feel that I would be much more supportive and sympathatic than my parents ever were because I know what it's all about and I've also taken the time to research the disorder a little bit.

      Besides, there is research being done and who knows---the cure could be right around the corner!!

      Kim

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      • #4
        Women's Issues

        Hi Kim,

        Because my son has TS, I think that I am a better parent because of it.

        TS has made me a more caring person and I think I love my son more because of the challenges he faces everyday.

        Hopefully a cure is around the corner and this forum will become like a museum about Tourette Syndrome. Steph

        Comment


        • #5
          Women's Issues

          I feel the same way. Had I known, I would not have done anything differently. I sometimes joke about how boring my life would be if I were a "normie" and my boys were normies... most just tell me my life would be quieter :P Chances are that all 4 of my boys have some degree of TS... all have presented with both verbal and motor tics... I believe that because of the work we have done as an organization, we have definitely done a lot for increasing awareness and with knowledge comes understanding. More and more people with TS are being accepted into society without all the negative stereotyping because there is so much info available now.
          Janet

          TSFC Homepage

          Comment


          • #6
            Re: Women's Issues

            I was diagnosed with TS two years ago, however my symptoms only started to show three years ago at age 25 (that's an entirely different story...I'll have to write another post!) I have both motor and vocal tics along with sensory tics. I am now married and want to start a family but am worried about going off my medication (Clonidine) to do so. I have just started the slow process of weaning off the meds and haven't seen any bad effects yet but am wondering how difficult it will become once the meds are completely out of my system. Has anyone been in this situation before? How was pregnancy for those with TS? Did your symptoms lessen, worsen, stay the same? Any feed back would be greatly appreciated. Thanks!

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            • #7
              Re: Women's Issues

              Update:

              Well, it's week number two of 'weaning' off my Clonidine and I'm not a happy camper. I feel like a celebrity who's just entered rehab. Seriously. My head aches constantly and believe it or not, I have frequent nausea. My motor tics are worse than ever and I've start screaming at night again. Basically, it feels like it did before I was first diagnosed. It's taking me up to three hours a night to fall asleep which is not only difficult on me, but my husband as well. We want to start a family so much but we're wondering how we'll be able to handle this situation long term. I'm going to ask the question again: has anyone gone off a medication to become pregnant? Any insight would truly help. Thanks. -Kelly

              Comment


              • #8
                Re: Women's Issues

                Hi Kelly

                I was not diagnosed until after having children so I have not been in your situation. Have you talked to your doctor about starting a family? was it your doctor who suggested you come off the meds to do this?
                Janet

                TSFC Homepage

                Comment


                • #9
                  Re: Women's Issues

                  Hi Janet--

                  Thanks for your reply. Yes, it was on the advice of my doctor that I stop my medication. She said that there is not enough evidence to support being on Clonidine while pregnant. From my research as well, there have not been enough studies to suggest that this medication can be used safely during pregnancy. My doctor has been with me throughout this entire process (being diagnosed, treatment and now family planning) and although she is a nice person, she doesn't have much knowledge when it comes to TS. I think I may be her first and only 'case' to tell you the truth from our conversations. I live in a relatively small city so there's not a lot of support out there for people in my similar situation. I basically have done most of my own research! I am planning to call my Neurologist on Monday and have talked to my Pharmacist as well for advice. She stated that I might need to 'wean' off my medication at a slower rate (my current rate is a four week period) to stop the headaches and nausea. As for the tics coming back, nobody seems to be concerned except for myself and my husband! I guess everyone looks at this condition as something that really isn't so bad and in the grande scheme of things it's not, but support and encouragement always helps. Well, I have babbled long enough. Send me your ideas and thoughts--they are truly welcome! --Kelly

                  Comment


                  • #10
                    Re: Women's Issues

                    Hi, Kelly:
                    I haven't been in your exact situation but I have been with my TS+ son as he's weaned off 3 meds over a period of time. Yes, only do what you can handle at a time, even if you take a rest between reducing dosages. We always found that things evened out after awhile and then we waited until he had the time and courage to go down a bit further. I know we all feel for you but are applauding you and your courage at the same time!

                    As a Mom for 31 years, I can assure you that all children are a combination of joy, frustration, wonderment and confusion, all bundled up in a package that leaves you feeling like you're always slightly out of your league! I'm a hoping-to-be grandma, even while we're raising our youngest, 15 yr. old TS+ son. Like so many others have said, we're now better, more informed parents than we were with our first two and are looking forward to be supportive and informed grandparents. We're so flexible now we're like pretzels!

                    You'll know in your heart what is right for you and I know you'll go after it with the same courage and tenacity that you have tackled life with so far! All the best to both you and your husband!

                    Comment


                    • #11
                      Re: Women's Issues

                      Thank you so much Val. I have decided to do just this and take things a little slower when weaning off the medication. This past weekend felt much better which was a welcome change. But, as we all know, tics come and go in severity and tonight I am restless and not able to settle down...hence the writing of this reply!

                      I was so touched by your kind words that I had my husband read it as well. We both teared up--I am not exagerating. It's just so moving to have a complete stranger care so much for us and our situation.

                      Well, I it's almost 2 a.m. so I should try to get some sleep. Thanks again for the reply...it meant the world.

                      --Kelly

                      Comment


                      • #12
                        Re: Women's Issues

                        I'm so glad that things are settling down a bit for you, Kelly. We've found some great help from our naturopath as well on things like calming nerves using diet and supplements that don't interact with meds.

                        Tonight I watched a "Supernanny" episode about a family that had an ADHD child, two other little ones and one on the way, with an exhausted pregnant Mom and a Dad who was lazy (but not for long! The nanny made the Dad wear a weighted backpack so he could see what life was like for Mom! He got the message!). It was excellent because it was a good reminder about how much encouragement each member of the family needs. My favourite part was when Jo, the nanny, took the Mom upstairs to a quiet room with a poster of her ADHD boy and had her write on the poster all the words she could think of to describe her son. She had no problem writing all these great things and Jo encouraged her to come there and look at the poster when she was angry at her son when he was really just overwhelmed by the ADHD. What a simple solution! Remember this for when you're parents--not just for the kids with the diagnosis either! I'm going to start with my husband's picture, actually, as I get so caught up with our son that I forget what a wonderful man I'm married to! It's a good tool for all relationships, I think! I love it when the light goes on!

                        I should tell you, too, that our 15 yr. old TS+ son is tremendously creative and is a performer. He dragged me back into theatre when he was 8 and just had to audition for a show. I never would have gone back to it, I don't think, even though I'd been a professional actress before having my second child. I could only see the negatives but I've learned so much since being involved with community theatre and it has given my son and me a shared interest. We're doing a show together in April ("Music Man") and both of us just finished performing in the Performing Arts Festival here in Speech Arts. It was hard for my son as the adjudicator loved my work and gave me very high marks while he didn't do as well as he deserved to marks-wise, even though his performances were very strong. It was a learning experience for him to accept that it wasn't fair but it was just one person's opinion. The best part for me was that he was so supportive of my performances-- because we have had our battles over the years. Even though he was close to tears at his own marks, he was there to cheer on Mom. It made me realize that we've come a long way and that this is a whole aspect of life that I wouldn't have experienced without him in it! One of those times that you realize that the struggle that TS+ can bring is worth the cost!

                        I also spent some time talking to my neighbour today, quite by accident as she was walking past our driveway. Her son was the medic killed in Afghanistan, Andrew Eyekelenboom (Boomer). He was just 23 when he died in August, two weeks before he was due home. She's set up a foundation called Boomer's Legacy and is continuing on the work for the women and children of Afghanistan that he started. She told me some heart-warming stories about what a remarkable son he was and, even though she has two other well-loved sons, she had a special bond with this one. She told me, laughing, that for the first ten years of his life she could have strangled him because he was so high energy and challenging, such a risk taker, but he became a very focused and committed young man, intent on serving others. When he was home for his last Christmas in 2005, he turned down her offer to go shopping for clothes for himself, saying he didn't need anything and would rather just stay home and play board games with her. Even though she and her family will always have those moments of grief, her son was such a tremendous gift to her that she told me she would rather go through all of it just to have had those 23 years with him--as a gift.

                        I think two caring, sensitive people like you and your husband will continue to "err" on the side of love too. As you can see from all the posts on the website there is a lot of struggle, pain and anguish being a parent--but when love underlies it, there's no doubt that it's worth all that you give--and more! There are lots of opportunities to get involved in parenting, even if you decide not to go the genetic route--everything from adopting to being surrogate aunt and uncle to a family that needs them! You'll find your level of comfort and your way to pass on all that you're learning--to share it with the next generation in the way that works for you. That's what life is all about, I'm learning now--in my 50's!

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                        • #13
                          Re: Women's Issues

                          The picture idea is great Val! Thanks for sharing.

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                          • #14
                            Re: Women's Issues

                            Hi Val

                            I watched this episode too and made my "jelly-fish" husband watch ;) too often he is consistently not consistent :eek:

                            I loved the picture activity too as well as the head phone empathy activity to get the Mom to understand. I don't watch this show but it caught my ear last night and I had to watch it.
                            Janet

                            TSFC Homepage

                            Comment


                            • #15
                              Re: Women's Issues

                              Another update: After taking things a little slower while weaning off my clonidine, I have decided to take the next step down in medication (my second last step in the process). I had gotten used to this stage, and now, even after the first day, things are crazy again! Such a torment! I was just thinking about the poor children who have to endure long-term medication withdrawl...I feel so badly for them. They are definitely the strong ones. I just keep telling myself that it will be all worth it in the end, when we do decide to get pregnant.

                              Unfortunately, I haven't found any additional information about women with TS trying to get pregnant. If there's anyone new reading this post, or if anyone has any new knowledge, I'd love to hear it. I've always needed to be well informed about every subject and this is just driving me crazy. I guess it has to do with having no control...a little OCD shining through perhaps?

                              Any input would truly be helpful. Thanks every so much!

                              --Kelly

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