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twins with Tourrettes

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  • twins with Tourrettes

    Hi everyone,

    I have twin boys who are 10 1/2 and they were diagnosed with mild Tourrettes two years ago, along with adhd, anxiety, ocd. it started with one of my twins a year before diagnosis with him clearing his throat in grade two. at first I didnt think much of it and after he was doing it for a while, I asked his teacher about it. she noticed it and said it wasnt too disturbing, but did mention Tourrettes at the time.

    fast forward to grade three. now we are having major issues with focusing in class. actually, we have always have, but up until now, the teachers always assurred me it was a boy thing and that school was not meant for little boys. The grade three teacher came to me with her concerns because not only was M clearing his throat a lot, he was also shaking his head and banging it on the desk when he was frustrated. not only would he bang it, but he would let it become dead weight and his head would just fall and smash into the desk and startle everyone. His identical twin was also doing this, and his head shake had a definate pattern to it. he later started sniffing.

    we were referred for testing and I already knew by now that Tourrettes was the most likely diagnosis, after talking to a lady from another parenting board.

    we struggled through the rest of grade three and through grade four with their focusing issues and now they are in grade five. They have a wonderful teacher this year, but I am finding I need to sit with them for at least two hours if not three every day after school to help with their homework because they just do not get enough time during class. they have an IEP, but it still isnt enough time. I am really beginning to think about medication, but am so worried about the side effects. my boys are already very small for their age, eating is not high on their priority and we do have anxiety issues in one and ocd issues in the other. I am at my wits end with homework, and dh is frustrated because I am tired and frustrated by the time he gets home from work. I have tried putting off homework until after dinner but that does not go well at all, they are too tired. I give them an hour after school to wind down and then I start with the homework at the same time trying to prepare dinner. I also work mornings and am off work just in time to pick them up from school. I am tired.

    A's tics are so minimal right now, you wouldnt know he had them. M's tics are more pronounced, they have always been. right now he clears his throat, snorts and he has a bit of a hum when he is sitting quietly. the snorting is really getting to my dh, he hates it. he has lately been saying things to him like, clear your throat and shake your head all you want, but try really hard not to snort. I'm not sure if its such a good idea to bring attention to it, but It really grosses out my dh. I ignore it myself.

    I also have a 12 year old with adhd, odd, emotional issues and he was born with a heart defect, but that's another story, lol.

  • #2
    Re: twins with Tourrettes

    Your life must be fascinating.

    Ha, sorry to lead with that but that's my first impression. Twins with TS+? Sounds like an adventure. I've always wondered about (read: feared) the prospect of my wife and I producing a kid with Tourette's and/or OCD... but twins? I don't mean to dramatize or frighten you here... I'll move on:

    Uhm, welcome to the forums! You're certainly in the right place for advice when it comes to this stuff, as I know there are some parents of multiple kids with TS here... albeit not with the same birthdays as far as I know.

    I can certainly nod at the homework and schooling issues... I wasn't diagnosed with TS and the lot until I was about 20, but I can say that ADD and OCD symptoms contributed greatly to my declining interest in school over the years. As much as school is not meant for little boys it's quite the cage for many kids with TS+. I may sound strong on that point, and I shouldn't be put in any after-school specials, but dropping out of college is one of the best choices that I have ever made.

    Now: that's not for everyone, mind you. I dropped out with other goals in mind and a full-time job in a growing industry lined up. But it did give me some room to breathe and expand. Since then, I've turned out okay... I'm recently married, I'm now self-employed and so far reasonably successful. As much as TS+ symptoms have pushed me towards apathy in educational institutions, they have compelled me to pursue my own interests.

    I don't mean to say that your twins should ignore school, especially at the age of ten. And in my case, my TS symptoms were pretty small as a kid -- they exploded when I was about 20. But I have seen in others that sometimes a strict schedule of schoolwork, homework and overwork can be counter-productive. (One example: my younger brother struggled through school and gained little from it until he became home-schooled.) Perhaps finding an appropriate balance between pushing forward and exhaustion can be found?

    Of course, every kid is different -- even twins -- so it's important to find what works best for yours. I'll happily yield the floor to some of the parents in here who can offer some other advice...


    • #3
      Re: twins with Tourrettes

      Hi twins with Tourettes

      I too have twins and two older boys (16 and almost 10) ...I can related because I get tired too.

      My older boys have TSplus -ADHD/OCD. Both have a specific LD, one has dyslexia and my oldest is gifted but has a written output disorder.

      My twin is 7 1/2 and both are symptomatic but not diagnosed...I know what it is but it is not on paper officially. One is ADHD/OCD and has tics the other is OCD with anxiety and tics.

      Homework is a challenge for our boys. The oldest can self manage and need continuous support to get things done on time. The other is struggling due to not being able to read at the level necessary and he shuts down quickly. Lots of sensory issues with food choices and clothes/textiles.

      For my oldest his marks are extremely important because he is in high school so we fight about these things a fair bit. I would like to say something other than fight but lots of times it feels just like that. That is where my TS symptoms come into play.

      I have made a choice for my younger boys and that is that Homework is not the biggest priority. Quality of Home life is. If it is a good day we get lots done on the bad days we don't. Capitalize on the good ones.

      I take it one day at a time. One thing I had to start doing was taking me time and setting time aside for my husband and I just to have a coffee together. keeping everyone to a schedule is one of the challenges too because we deal with sleep issues too.

      Stay connected and hang in there it is so worth it when you come past the trying days.

      TSFC Homepage


      • #4
        Re: twins with Tourrettes

        Thanks for the welcome Janet.

        I try very hard to pick my battles where homework is concerned. it literally takes hours for him to complete what most would do in 15 minutes. his focusing is becoming really bad lately and I am not successful at helping him anymore.

        one of my twins had sleep issues which resolve once they shared a room again, no more crying himself to sleep with worrying. they also have sensory issues with their clothing. they wear the same pair of shorts day in and day out no matter where we are going. they will even sleep in them if I dont check on them right at bedtime. they get really attached to certain items of clothing and will not part with them.

        I did notice, and it took me a long time to figure it out, that when they were stressed or anxious about an event etc, they would start complaining about their clothing or shoes. it would seem their senses were so heightened that their sleeves would bother them, or their shoes were too tight, and these are items that they have worn in the past, so they were already used to them. I now know they manifest their stress into their clothing. It only took me eight years to figure it out, lol..


        • #5
          Re: twins with Tourrettes

          hello cailean,

          yes, school is hard for them. even so, they did very well because they do try very hard.

          I just want them to finish so they can make up their own minds when they are older what they want to do. and I want them to finish with pride, that they did the absolute best they could. They are very bright, just have a difficult time staying focused and getting things done on time

          thanks for your insight.


          • #6
            Re: twins with Tourrettes

            Oh yes, by all means encourage them to keep going with school. It's definitely better to have it done and have those opportunities that come with it. There's no doubt about it: when you don't have the diploma and/or degree behind you, you do need to work harder to prove yourself and make your place.

            I only meant that school is especially frustrating in this situation. My advice is that they try the best they can, but also know that sometimes, you have to do things your own way. I don't think TS+ people (of any age) often fit too well into rigid environments.


            • #7
              Re: twins with Tourrettes

              where homework is concerned. it literally takes hours for him to complete what most would do in 15 minutes
              When homework is taking this long, it is definitely a problem that needs to be addressed with the school. Sometimes as parents we get locked into the idea that our children need to succeed at school, and part of what that means is they need to do their homework like everyone else. Does the teacher understand what is happening with the homework?

              Sometimes our children spend so much of their energy during the school day trying to focus, holding in their tics, etc. etc. that they have absolutely no focus left to handle homework. Other solutions can be put into place.

              My son had similar problems with his homework as you describe. We tried different times for doing the homework, different strategies -- basically anything you can think of and had little to no success. We worked out a system with the school where he had to make a effort to do his homework for a prescribed amount of time everyday. If he was able to focus and work, then he worked for that amount of time and did whatever he could. If homework was an impossibility, then we let the teacher know by writing a note in the daily agenda (and putting the agenda back in the backpack so it actually went to school) One of the keys to this is that the student is still responsible for the work that is assigned to him/her. Assignments can be modified, if required (e.g. do every other problem), but they still need to be done.

              Once my son got older he got better at handling his homework. He had learned that he was still responsible for getting the work done and found ways to get it done when he had the required focus to do it.

              There is a section in Understanding Tourette Syndrome: A Handbook for Families that deals with homework that you may find helpful.
              Forum Moderator


              • #8
                Re: twins with Tourrettes

                Hi Cathy,

                The school already knows about the struggles at home, I have a great relationship with their teacher. he is wonderful at being understanding and has let a few of the assignments go. he even had M stay in after school to do his math test because he was too distracted during the day, and the marks needed to get in for that reporting period. when I looked in on them, the teacher was sitting right beside him, helping him through it.

                we have implented much of what you have suggested already. the teacher sends home the work that is not finished in class and it is usually every second question.

                I have on many occaisions sent the work back unfinished and emailed the teacher about it.

                They are having so much trouble focusing, partly due to the noise level in the class (once the other kids are finished, they start to become restless which is distracting to my guys. I told the teacher and he says he tries to keep them quiet but there comes a time when the class must move on ) I also think it is a tic suppression thing to as the teacher does not notice it at all during class.

                I am starting to wonder if medication may be helpful, but do worry about the side effects.

                thank you for the link, I will read it today.


                • #9
                  Re: twins with Tourrettes

                  Originally posted by mythreesons View Post
                  I am starting to wonder if medication may be helpful, but do worry about the side effects.
                  Welcome mythreesons!

                  I can relate to your concerns over medications. It was very hard for me to accept having my son on medication. I resisted for a very long time but finally in the end did try medication.

                  My son's TS specialist was able to make me feel much better about trying it when he explained that taking medication for TS was the same as taking medication for epilepsy or insulin for diabetics. He said most parents do have a difficult time with the decision to use meds for TS. TS is a medical condition that sometimes requires medication. When it was put in that context the choice was a lot easier for me to make.

                  For us meds were the right choice. It is a very personal decision though. You have to weigh the pros and cons very carefully with a professional who has experience treating TS.

                  I am a strong believer that meds should not be the only treatment. Cognitive Behaviour Therapy, speech therapy, social skills training, etc. should be looked into to see if they can help. Sometimes meds in combination with therapy is a really good option. The combination has worked well for us.

                  Talk over your options with your son's doctor. Having a really good experienced doctor has been a life line for us.


                  • #10
                    Re: twins with Tourrettes

                    It's a good thing you have a good relationship with the teacher. Teachers can really make all the difference in this situation.

                    My brother would have good years or bad years based on his teacher -- whether he had one that understood his symptoms and was willing to accommodate him, or one that felt it wasn't their problem (the "I'm not paid enough to deal with this" attitude, although given the pay teachers receive these days that's probably true).


                    • #11
                      Re: twins with Tourrettes

                      Hi, I am new here as well, but I felt I might pass along some wisdom that my son's Psychiatrist passed on to me in regards to medications. I was very concerned about putting my son on medication because of the possibility of damaging side effects, and she pointed out to me that he may have some side effects, and we can work to minimize them, but he is certainly suffering with the side effects of his TS/ADHD,(frustration, lack of focus, low self-esteem) and wil continue to --that is a guarantee. If a medication can help him with some of the problems he faces because of his condition, give it a try and see which side effects will be less damaging. I found that to be quite helpful in my decision process of whether to medicate or not. We presently have him on Concerta, and while it does have side effects (sleep problems, appetite suppression) it has certainly helped him with his aggression problem, and helped unearth some empathy within him. It is no magic cure, and we need to continue with other behaviour modification practices, and I am not sure it will be the drug to keep him on, but I am not as afraid of the medicines. Thanks--hope it helps.


                      • #12
                        Re: twins with Tourrettes

                        Originally posted by denisekh View Post
                        certainly suffering with the side effects of his TS/ADHD,(frustration, lack of focus, low self-esteem) and wil continue to --that is a guarantee. If a medication can help him with some of the problems he faces because of his condition, give it a try and see which side effects will be less damaging.

                        Welcome denisekh!

                        I completely agree. Sometimes medication can give our kids a chance that they might not otherwise have had. Although I am all for individuality and accepting people for who they are I don't think we should underestimate how important it is for kids and teens to feel accepted and like they fit in. Being welcomed as a part of a group of peers is very very important for their self-esteem, social development, and overall health.

                        As my son gets older we have been giving him more and more control over whether or not he chooses to take medication. We discuss it together with his doctor and I hope this process is helping him to learn more about his disorders and what he can do to lessen the impact these disorders have on him. I think this is an important step as one day our kids will have to manage their healthcare on their own.

                        Over the years I have met several older teens that took meds as a child and felt that taking the meds enabled them to learn the strategies they needed to become med free. I also know of many adults who continue to take meds as they feel it significantly increases their ability to focus and improves their quality of life.

                        On the flip side I have also heard young adults talk about how they did not like being on meds as a child and now choose to live med free. In the end you have to do what is right for your child and family. Everyone is different and will make different choices. There is no right or wrong here.


                        • #13
                          Re: twins with Tourrettes

                          Hi my 3 sons
                          Are you thinking about medication for the tics, the attention or other symptoms? I had a sense you are mostly concerned about your boys' trouble focussing. So far, we have not tried any meds with our TS+ son (11) but we are seriously considering an SSRI for his OCD which is by far his worst problem. He would take double the tics to be free of the OCD! His attention is also a major issue, but I have never been keen on trying a med for that because I am afraid it would worsen the tics. There is a thread somewhere, though, that talks a lot about newer ADHD meds that are less likely to increase tics. I would LOVE my son to try them - I know life would be a lot easier, but I think we need to address the OCD first.
                          I also feel that my son spends a lot of energy suppressing tics (and dealing with obsessions) that he has less energy for school.
                          Last edited by kristin; January 19, 2008, 07:55 PM.


                          • #14
                            Re: twins with Tourrettes

                            The medication is directed to helping his ADHD. He doesn't suffer from severe tics at all, but he was suffering from restlessness and frustration meltdowns at school. He was also getting aggressive at home and at school. The meds really helped with these issues--though he still needed a special classroom. Though not some magic cure, I know it has helped even out my son's temper a bit, and helped him unveil some great aspects of his personality which were always overshadowed. This drug, Concerta, did not increase his tics, though the doctor said it commonly does.