Announcement

Collapse

Welcome to the updated and refreshed Tourette Canada Online Forum!

Tourette Canada Online Forum is a free, safe, moderated online community where registered users can exchange ideas, information and support about issues related to Tourette Syndrome. Tourette Canada has recently changed the server and refreshed the pages so returning members will notice a brighter look. Tourette Canada welcomes back two former moderators, Janet Rumsey and Cathy Wylie, to the Forum. Their knowledge and insight will serve the Tourette Forum participants with dedication and expertise.

We would like to thank the administrators and moderators who have dedicated countless hours to build and maintain the Forum. We look forward to continuing to provide a place for individuals and families affected by Tourette Syndrome and its associated disorders to get information, exchange information with others, and connect with the affiliates and support available across Canada.
See more
See less

I'm new and need some feedback...

Collapse
X
  • Filter
  • Time
  • Show
Clear All
new posts

  • I'm new and need some feedback...

    I don't where to start here! I can start with when my son really started to worry us. At about 2 and a half, maybe closer to three, he started jumping compulsively. He jumps and hops, flings his arms arounds. Somtimes he grunts and is so engrossed in his 'jumping' like he's concentrating about something, he's now 4.

    We thought it was a phase but it doesn't seem to be lessening at all. We got rid of the tv, he still does it, worse actually because there are no distractions. We try to distract him in other ways, he plays or reads with us for a little while, a few minutes, but is right back to jumping in no time.

    He's always been a bit different, he would not eat solid food until he was 18 months old, he wouldn't put anything in his mouth and chew on things like other babies, he would gag and throw up. He breastfed exclusively for 18 months, even at two years old he was breastfeeding 6 times a day. I have no problem with this but his reaction to anything in his mouth was extreme and a bit worrying for me.

    He also toots his own little imaginary trumpet, I didn't think anything of it really, until I started reading the symptoms of Tourette Syndrome. I was doing the dishes this morning, with my little guy just a jumping away, with great energy and force in the other room and I was thinking how I read a lot about ADHD/ADD and Aspergers and neither seemed to describe my kid but his behaviour is just not productive and I worry it will lead to teasing, etc. He gets going and blocks everything out around himself, he seems like he can't control it. I've asked him to please stop jumping when we are trying to do something together, he tries but seems compulsed to get up and hop.

    I've not seen a doctor, I'm afraid he will be diagnosed with ADHD and we will be pressured to make him take medication. But, the bottom line is that we are concerned. I thought once the weather was nicer here and we could get out more, he could get more energy out, etc. But it doesn't matter if we've been out all day walking, running, playing, etc. He comes inside and jumps and hops across the living room, then he jumps and hops back the other way, then he does it again, over and over. It's exhausting just being in the same household with him.

    He's a real doll though (of course). He can be snuggly and loves to give and get hugs and kisses. He's happy and friendly.

    We try so hard to not make a big deal out of it. Sometimes he really gets going with such speed and concentration, I've asked him where he is hopping to or what he's thinking about, he says ,'Nothing/No where.' I can distract him for a few minutes but that's about it.

    Like I said, I don't want to see the doctor, I'm just wondering, what, if anything I can do without medication. I so don't want to label my kid with a disorder and taking him to doctor when really, he's not hurting anyone and seems quite happy, what's the point? I do want to understand him better. We get along well but the constant jumping is disruptive. What happens when he's 5 and 6 and 7? I was thinking he would out grow it but he doesn't show any signs of slowing down or doing it less, if anything, he does it more and more. I decided long ago that I'm going to look at all our schooling options, from home school to private. I'm leaning toward homeschooling right now, for many reasons.

    Anyway, just thought I would get this out, vent a bit. I would love to hear from anyone who can relate. Thanks! Day

  • #2
    I'm new and need some feedback...

    Welcome Day

    Sounds like uve got quite the ball of energy. TS, obsessions and ADHD dont need Rx drugs to treat unless the symptoms become life threatening or he hurts himself, both r rare in TS. If u see a doc and he pressures u into something u dont want I would suggest gettin a better doc. U could also see a naturopath or someone who does cognitive therpy. I understand u not wanting a label and if u r doin research on his symptoms you'll be a lot better help to him than a doc or a label. The only thing gettin a diagnoses may help u with is to understand his problem better. Gettin a test for allergies can rule out anything making him hyper and eliminating sugar may help as well.

    I think homeschooling is great for two reasons; the torment many with ts feel at school can have a bad affect on their self esteem, and he will probably get a better education :lol:

    Have u thought of gettin him a rebounder? If he has ts ocd it wont encourage him to jump as its something he cant help and people with ts like to have a safe and secure place they can release. So if he likes it who knows it may encourage him to wait till he gets home to jump and its supposed to be good exercise too Best wishes

    Comment


    • #3
      I'm new and need some feedback...

      Hi Scott! I'm glad you replied, thank you so much!

      I'm off to look for a rebounder, whatever it is, sounds like something we need! You should see this kid, he has leg muscles like a bicyclist with all the excercise he gets.

      Your encouragement and suggestions are really helpful and appreciated, thank you! Day

      Comment


      • #4
        I'm new and need some feedback...

        Hi again, do you mean an indoor trampoline by rebounder? We did get one of those this winter and he used it a bit but went right back to jumping and hopping across the room.

        Just admitting we are experiencing major disruption around here, finding this site and info on ts, and getting feedback is really helping me right now. I'm at the point where I *know* there is something wrong and it's time to stop waiting for the day this 'phase' will end, because it clearly will not or will be replaced by something else, I'm sure. Good night! Thanks again, Day

        Comment


        • #5
          I'm new and need some feedback...

          Hi Day

          None of us wants to put a label on our kids, but as least it will give you peace of mind to know why he is doing this.

          Comment


          • #6
            I'm new and need some feedback...

            Hi, cookie, you are so right. Already I feel relieved that I've admitted his behavior is not just a phase. I know he can't control it and really, it will help so much in convincing his father he can't help it. I'm more accepting of his behavior than his father. If we do see a doctor and get a diagnosis and label, I totally see the value in that. I'm worried about what the diagnonsis process will do to my son though. I don't know what the evaluation consists of. We live in an area where we have not one specialist in our town, so I'm assuming we would need to travel. Regardless, we are on our road to better understanding and that can only be a good thing. I feel like I understand our little guy pretty well, he is who he is. He's really not like other kids at all and I'm used to it. My family is full of tics and eccentricities. Now to just help my husband understand it better. Day

            Comment


            • #7
              I'm new and need some feedback...

              Day,

              Welcome to the TSFC Forum and thank you for sharing the story of your wonderful little guy.

              Are you in an area where there is access to medical facilities?

              My first suggestion would be to have the little guy correctly evaluated and properly diagnosed by a competent health professional.

              One cannot speculate on what issues he may be dealing with and in fairness to your son, he needs to be diagnosed.

              Not all physician have expertise in movement disorders, which is why you need to do some research on the facilities in your area.

              Let us know in what area you are located, to see where you might start looking.

              As you may know, there is no diagnostic or blood test for TS, and must be diagnosed through observation. That's why you need someone with training an expertise in these disorders.

              Once you know what you are dealing with, you can plan an appropriate strategy of helping the little guy deal with it.

              When it comes to medications, the decision is based on benefits vs risks and inconveniences in order to maintain a quality of life.

              You don't want to get ahead of yourself at this point by being concerned about treatments. You need a competent diagnosis.

              So please tell us in what part of the Country you are located and we can plan the next step.

              Your son will appreciate the love and concern you have for him in future years. There are resources available to you, and together we can figure out the best way for you to make use of these resources.

              Looking forward hearing from you!
              Steve

              Dum spiro spero....While I breathe, I hope

              Tourette Canada Homepage
              If you enjoy the TC Forum, please consider a Tourette Canada membership
              Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

              Comment


              • #8
                I'm new and need some feedback...

                Thanks so much Steve. I'm in Quesnel BC. 150 km south of Prince George, 600+ km north of Kamloops and Kelowna, 800 km north of Vancouver.

                What I am worried about is putting my son through countless doctor's appointments in different locations and then after all that coming up with nothing constructive in the end. Just so my husband, family and friends will accept him finally for who he is because of an official diagnosis. In my mind, he should be accepted just because he is a great kid despite his eccentricities. Am I being unreasonable? I do think my expectations are unrealistic but that doesn't make it easier.

                I do think a diagnosis would be beneficial just to have something to tell people when they see him hop and jump and refuse to wear clothes or poop in toilet or get a haircut. I think people think I?m not firm enough (including his father who is far less firm than I - is it at all obvious that there is a lot of tension between us these days? sigh). The truth is I am firm with him, far from not having a backbone or boundaries around here.

                Everyone here seems to have my son's best interest at heart and I appreciate it so much. I would love any information on what is available in my area. Thank you everyone!!!! Day

                Comment


                • #9
                  I'm new and need some feedback...

                  A diagnosis is helpful, because if it is Tourette's, there may be associated symptoms of ADHD, ADD or OCD that will develop later. I think 'textbook' cases of Tourette's usually become apparent at about 7 years.

                  Being diagnosed, and keeping in touch with a specialist can help. At the moment, the only factor is your own peace of mind. But if Tourette's is the issue, it'll help your son to know why as he gets older, becomes more aware of his own situation and wants to make his own choices of how to deal with it.

                  The fear is - if these are signs of TS, what happens if at 6 or 7, it develops into a full-blown case of TS with any or all of the associated symptoms? If you're already in touch with a specialist, it'll be a lot sooner that you can deal with the problem, and get special help if necessary.

                  My brother's Tourette's developed rapidly at about 7. It took quite a while until he was able to get the help he needed -- and he went through some very troubling experiences at school while he waited for help.

                  For me, it was never a problem until now, at 21, and I'm rushing to try to see a specialist so I can get back to my 'regular' life. If I had been diagnosed earlier, I could have been closer to help by now. (For me, it's a pretty clear case of TS -- but I can't get any specific considerations or medication until I get the official diagnosis. There's a waiting list.)

                  Going to doctors can be a pain, yes, but if this is something that will develop, you'll be happy you got an early start.
                  Colin

                  Comment


                  • #10
                    I'm new and need some feedback...

                    Day,

                    CLICK HERE for a list of the TSFC chapters and contact representatives across Canada. You may wish to call the National Office (800) 361-3120 for the contact person in Prince George.

                    To get an accurate diagnosis will likely take some time and work, but a diagnosis is your most valuable tool. You need to know what the problem is before you can take corrective action or know how to deal with it.

                    As Cailean rightfully says, if there are associated disorders that may affect your son's ability to learn and/or integrate in school, you need to know before he starts school.

                    In the old days when children were not properly diagnosed and tested, they were thought of in school as being intentionally disruptive, poor learners and were often punished by unwitting school officials.

                    Much of that has changed thanks to awareness programs sponsored by TSFC, but the parent needs to know the precise status of their child in order that the child is given the resources he needs to succeed.


                    What I am worried about is putting my son through countless doctor's appointments in different locations and then after all that coming up with nothing constructive in the end
                    I don't understand your concern here. Your son is exhibiting behaviour that needs attention by a competent health professional. If he were complaining about chronic tummy aches, or persistent headaches, would you not have him fully evaluated to determine the cause? Any form of disorder should be fully investigated to rule out very serious conditions and to determine what is going on.

                    I think people think I?m not firm enough (including his father who is far less firm than I
                    Day, I sense your frustration and can say many of us have experienced the same feelings at first. It's why you need to develop a plan, and go at it one step at a time. There are people who understand your situation, many of whom are right here on the TS Forum while others are available locally through the TSFC, and are willing to help.

                    If indeed your little boy has Tourette, it's important you understand he cannot control the movements he makes. It's like an itch...you just have to scratch it!!! Another analogy is to try keeping your eyes open with out blinking. In a very short time you'll see it's impossible and you will blink.

                    The same kind of action is going on in your son...except instead of itching..the need is to hop or to cry out or whatever the tic of the day happens to be. Being firm or cross with him will only add to his tension and he'll tic more.

                    You need to find a compromise between what he needs to do and what you need. If he needs to jump and you are irritated by his jumping, tell him when he needs to jump to use a pre designated safe place to jump where it won't irritate you.

                    There are lots of relevant postings here on the Forum as well as on the Home Page of TSFC.

                    Look through the resources we have, and stay with us. If you find a discussion topic that interests you and you have a question on it, post a reply to that discussion. We'll be there to try to answer.

                    In the meantime, call the National Office on Monday morning, to find out about local resources. Ask your family physician for a referral to a pediatric neurologist or other specialist with experience and training in movement disorders and Tourette Syndrome.

                    And do keep us posted on your progress...we're here to help.
                    Steve

                    Dum spiro spero....While I breathe, I hope

                    Tourette Canada Homepage
                    If you enjoy the TC Forum, please consider a Tourette Canada membership
                    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                    Comment


                    • #11
                      I'm new and need some feedback...

                      Hi Day, I noted the comment about muscles - all the exercise has given our son Tim hugely strong arms, legs and neck muscles that he uses to great effect in sport. He plays rugby (in England) and this needs strength which he has plently of - it means he is a good player and gets respect from his team mates which gives him self esteem and this makes him happy - so something good comes from all that movement .
                      I'd like to add to those saying to go for a a proper diagnosis as it can take years and if you suddenly need it done it will still take years. Anyway - if you get the diagnosis of TS then so what? You don't have to give the drugs prescribed you can just carry on as you were before.
                      Cheers
                      David

                      Comment


                      • #12
                        I'm new and need some feedback...

                        Thank you so much for the link, Steve, I competely missed it. I did look on the site extensively for chapters and affiliates.

                        I think I'm now thoroughly and completely convinced to get him to the doctor. I will keep you all updated, for sure.

                        Should I tape his behaviour and take it in? I don't think I want to talk about it in front him. Is this reasonable?

                        Originally posted by Steve
                        If indeed your little boy has Tourette, it's important you understand he cannot control the movements he makes. It's like an itch...you just have to scratch it!!! Another analogy is to try keeping your eyes open with out blinking. In a very short time you'll see it's impossible and you will blink.

                        The same kind of action is going on in your son...except instead of itching..the need is to hop or to cry out or whatever the tic of the day happens to be. Being firm or cross with him will only add to his tension and he'll tic more.

                        You need to find a compromise between what he needs to do and what you need. If he needs to jump and you are irritated by his jumping, tell him when he needs to jump to use a pre designated safe place to jump where it won't irritate you.
                        I totally and completely agree with you, his jumping was alarming at first, now it's just part of our lives. I've since realised he cannot control it. I wish everyone we are close to felt the same way. When I say I'm firm, I mean about certain things that I need to be firm about, like pestering our 13 year old dog when she's sleeping, I don't allow that, or sticking his hands in my face, there's not a whole lot I don't let him explore. A few times I have been tired and the constant movement has frustrated me and I've asked him to please, just sit still for a few minutes. But, I never scold him for not being able to grant my request and it's been a long time since I've asked him to stop. His dad does though, all the time no matter how often I try to tell him that I don't think our son can stop, it's very, very frustrating.

                        Thanks again, I'm so glad I posted. I think I knew we would be off to the doctor, I just wasn't sure where to start. Day

                        Comment


                        • #13
                          I'm new and need some feedback...

                          Thank you, David!

                          I amazed at how strong this kid is!! I'm sure his energy will serve him well, just like your Tim. Day

                          Comment


                          • #14
                            I'm new and need some feedback...

                            Originally posted by Day
                            Should I tape his behaviour and take it in? I don't think I want to talk about it in front him. Is this reasonable?
                            That is an excellent idea, since he probably won't be doing his full repertoire in front of the doctor, so he/she can understand fully. And I agree that it would be better not to talk about certain things with your son listening. Maybe it would be possible for you to have some time with the doctor without your son being present.

                            The way they do it at the Tourette Clinic here in Toronto is, that they send you a whole pile of things to fill out and bring to your first visit. It will ask about all the tics and behaviours etc., so you probably won't have to say a lot of things in front of your son, anyway. They'll evaluate all that before your next visit. Since those things are pretty standardized I imagine you'll get the same sort of things to fill out (or should, anyway, if it's a specialist who knows what he is doing).

                            I was very surprised when filling out mine how many tics I actually have! So many things I've done all my life seemed perfectly normal to me (and of course, are normal for me personally), but they are tics. I thought everybody did those things! Now I realize that they don't. I guess it's all a matter of perspective. Still, I don't take meds. If I've lived with those things for 50 years without meds, I can handle them for the rest of my life. But most of my tics aren't stopping me from doing the things I want to do, my TS is fairly mild in comparison to some people I've seen and heard of.

                            So, medication isn't a must but should be a choice. An informed choice after finding out what the problem is. But most of all, a diagnosis will help you and others understand what's going on, and will help you develop coping strategies. And I agree with others here, that having a diagnosis before he starts school is very important for your son.
                            German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

                            Comment


                            • #15
                              I'm new and need some feedback...

                              Day,

                              As far as medication goes, thats a tricky situation. I think we all can agree that if you can go without meds thats the best but every person is different. But being afraid of having a disorder labled on him is a common fear of anybody. But you say your afraid of him having a lable and maybe being teased when he is older. This is probably true but I will be totally honest here, label or not, if other kids see him as "different", they are going to tease, unfortunately thats just what kids do. But after he gets through the "teasing"stage in his life and becomes older, the fact that he was never diagnosed actually then may be hurtful more than helpful. Internally you begin to wonder why you do the things you do and not think about getting around them in your life. From me being diagnosed from a young age, I have always had a reason for the tics that I could explain to people but more importantly, I had an easier time finding out how to control them. If I never found out what they were, I wouldnt know where to look for help. I understand the fear of a "label", but in reality, everyone has a "label" whether its easy to spot or not. Its not about the label as much as how you control it and not let it ruin your life.
                              The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

                              Comment

                              Working...
                              X