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I think my 4 year old son has tourettes please help

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  • I think my 4 year old son has tourettes please help

    My wonderful 4 year old has always had lots of energy. He will get up and march on the spot and slap his legs- occaisonally he will run across the room doing this. This has been going on about a year and we certainly were not concerned or embarrased by his behaviour. the last three weeks however, our son has been tilting his head repeatedly and quietly burping while doing this. It can be hundreds of times a day. He had a severe ear infection four weeks ago- my husband thinks this is the reason- but my heart aches and I feel it may be tourettes. I'm crying often - our family doctor is not concerned - and we can't get an appointment with the neurologist until Jan. 6/06. Any advice would be appreciated. I need to be strong, but I feel so bad. Tonight many people were staring at my cute boy at the grocery store- also my son has been smiling much less lately- Does the ticks affect his mood? Please help me...

  • #2
    I think my 4 year old son has tourettes please help

    Heath,

    Welcome to the TS Forum! Whatever is found in your little boy, there is nothing to be gained by feeling guilt or remorse. You have done nothing wrong.

    Your ambivalent feelings are understandable. Save yourself some anxiety by taking the process one step at a time, and dealing with each step as it comes.

    If you have a referral to a neurologist confirmed, even though it's in January, then you have made the first step. As you probably know neurologists have a long lead time for appts, due to the overwhelming demand.

    I would suggest contacting a local TSFC Chapter or Contact Representative for information on additional local resources.

    A diagnosis for TS is made by observation, which is why it's important to have your little guy seen by a competent physician with training and professional interest in TS. At this time there are no diagnostic tests for the disorder.

    TS tics wax and wane, and vary over time so a new tic pattern may evolve, then disappear only to be replaced by another tic patter. In the meantime there may be one or two underlying long standing tics.

    I say this because if it is TS, and we don't really know at this time, the head tilting may or may not be related to the ear infection, but may be the onset of a new tic pattern...if it is TS.

    People will stare at others when they have port wine stains, a wart on the nose, red hair, big ears, dreamy eyes, people in wheelchairs, and yes...Tourette Syndrome.

    The fact that people stare is not a reflection on you and you should not feel embarrassed.

    It's normal if the tic activity of a person with TS catches someone's eye and they glance over...but staring is rude.

    Creating awareness usually works with most people, and with time if indeed your son is diagnosed with TS, you and your son will learn to explain (when necessary) that TS is a neurological disorder and the tics are involuntary. You'll be surprised at how understanding are most people.

    Why is your family physician not expressing concern? Does he/she have an explanation for your son's behaviour?

    Please read through the articles posted on the TSFC homepage including the following:

    The Nine Faces of a Tourette Parent

    Facts and Myths about TS

    An Education in Education

    I don't know if there is a direct correlation between TS and depression. Could it be the little guy is detects Mom and Dad's anxiety and perhaps feels he is doing something wrong?

    The resources of TSFC and this Forum are here to help you, and we're glad you have made contact.

    Let us work with you, use us as your sounding board and feel free to ask all your questions...we'll do our best to get some answers or at least to point you in the right direction.

    Regards,
    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


    • #3
      I think my 4 year old son has tourettes please help

      Hi Heath:

      Welcome to the Bulletin Board.

      I echo what Steve says -- take it one step at a time.

      I am sure you are feeling overwhelmed right now, and it is more difficult to deal with what is going on with your son when you don't have the answers yet. When my son was diagnosed it was actually a bit of a relief because now we knew what we were dealing with. It was also a very difficult time, because we now also knew what we were dealing with.

      I remember feeling that everyone was looking at my son and noticing the tics. I also remember thinking that they were thinking I should do something about it. I learned two things. Most people were not really looking at my son. I was just so self-conscious about it that it felt like they were. Secondly, I grew a thicker skin. At some point I stopped caring whether people were noticing the tics. Those people who appeared to be bothered or who commented on the tics/behaviour soon got a polite education in TS.

      One of the most important lessons I learned was that I had to stop asking my son to stop ticcing. This was a tough lesson because some of my son's tics including hitting the walls and hitting the tables. He also had a loud vocal tic for a long time. I am super sensitive to noises, so these were hard to deal with. However, I eventually came to accept that the tics were truly involuntary and by asking him to stop I was creating a no-win situation for everyone. He could control the tics for a little while, but then he would tic again. Then he would feel bad about the tics because he knew they were bothering us, and he would feel like he was doing something wrong. It got into quite a vicious circle. Once we learned to live with the tics, he also learned to live with them. The net result was that the amount that he ticced was much reduced (less stress), and his feeling of self-worth was improved.

      My son does not find that the tics affect his mood, but he did find that the periods of time where he was under scrutiny because of his tics were difficult. When he changed schools, or was in new situations where no one knew him he would either feel down, or get defensive (and act out). He is now 18 and can articulate a bit about some of his experiences dealing with tics while growing up.

      I know this is a diffcult time to deal with, but hang in there. As Steve said -- use us as your sounding board. There are parents who have gone through what you going through, and adults with TS who have lived through what your son is experiencing who can respond to your questions and concerns in the forums.

      Also, check with the neurologist and ask to get on their cancellation list. Call back every few weeks to see if anything has opened up.
      Cathy
      Forum Moderator

      Comment


      • #4
        I think my 4 year old son has tourettes please help

        Hello There Heath

        Welcome to our circle of friends and support. I have Ts and four sons, two of which have TS (13 and 7 yrs). Like Cathy and Steve said...hang in there and ask whatever questions you feel you need to ask.

        We find that mood is not attached to our tics but certainly find a correlation between the tics and anxiety...tics seem to present with good and bad stress, so going shopping and/or anticipating something fun can certainly bring on the tics.

        There is a lot of time between now and January so a best practise I always share is to start a journal and start recording life with your little man. Document any behaviors-tics that have been present in the past and estimate the time lines they were present. Document noises or any sensitivity issues (over/under sensitive to noises, smells, textures, foods, clothing, ect) as well as any other concerns and questions that you think you may want to ask. Like Steve shared, a diagnosis comes from observation and it comes from history... creating the journal will be your best resource when January rolls around.

        The process may take a while but you have lots of people on this forum to help you along the way. It's important to stay connected.
        Janet

        TSFC Homepage

        Comment


        • #5
          Thank you Steve, Cathy, and Janet

          I would like to thank all of you for writing back. I am going through periods of certainty that it is TS and other periods where I'm certain its not. My son has no vocal tics- other than quiet burping- when he tilts his head. I also notice he rarely tilts his head in the morning. Also he has no facial tics. That said he is still head tilting, and running across the room flapping his hands (he is always excited when doing this). I'm trying not to focus on TS at this point- I was making myself to upset. I love my son and I need to be healthy for him- and positive. I will take it one day at a time and if the diagnosis is TS - I will deal with it then, and I am thankfull you will be there, understanding and caring.
          Thank you,
          Heath

          Comment


          • #6
            I think my 4 year old son has tourettes please help

            Hi Heath

            I'm glad you're not jumping into assuming TS. TS is a syndrome because it presents so differently in all of us. There are varying degrees of TS too. Not all cases are severe. I have had a positive experience growing up with TS and it was not diagnosed. My oldest son always says he would never take his TS away because it makes him who he is. Our experience in our family has been positive.

            You should still track anything you are concerned about. My 13 yr old has a head tic that is a head tilt and it has been with him for a while. My 7 year jumps like a jumping bean and flaps his arms too when excited. No doctor will diagnose any disorder unless they are sure. Tics by nature wax and wane which means they come and go. For TS to be present both motor and vocal tics (a min of 1) need to be present for a period of at least 1 year. Keep in mind that tics can be very simple tics vs others that are more complex. Simple vocal tics can be clearing your thoat, sighing, sniffing, humming, whistling, sucking or purring sounds...anything oral that makes any type of sound. My kids and I have had very few vocal tics and all of them have been simple.

            Heath the best thing that you have done is that you have thought that TS is a possibility...so if the diagnosis comes then it will not be as shocking to you. I was anticipating ADHD with my oldest so when TS plus (ADHD/OCD) came I had a difficult time processing it... mostly because I knew nothing about TS so it was scary and also because I had to accept that my perfect, normal child was not so perfectly normal. Regardless of what diagnosis a family receives there is that "feelings wheel" we need to go through... the grieving process and all parents go through this. My diagnosis only came through my son being diagnosed and my parents are in their 70's and believe it or not my Dad still went through that grieving process and expressed feelings of guilt for not knowing when I was young. We are human first so emotions are part of the process.

            Heath try not to be upset by the thoughts of TS. Enjoy you summer with you son and continue to read and follow our forum. It's amazing how much info is out there on not only TS but lots of things. With knowledge comes understanding...please stay connected with us and you don't have to have TS or have TS in your family to participate.

            Looking forward to hearing from you again.
            Janet

            TSFC Homepage

            Comment


            • #7
              I think my 4 year old son has tourettes please help

              Heath, I know exactly how you feel! My guy is 4.5 years old and has not been diagnosed. Our gp referred us to a ped but thinks it's a phase and just wants confirmation of this. :roll: We'll finally see the ped at the end of Sept.

              Our guy jumps like a frog, jerks his arms, sort of hums or grunts at the same time. At first the thought of TS had me mortified, I was really upset. But, now after a few months of this consideration and reading and being part of the TS forums here, it's doesn't seem so bad. I guess I just got used to the idea but it still does pain me. The energy put into to jumping could be spent in more constructive ways. I see the looks we get too, they are looking. And waiting for doctor's appointments all the while knowing the doctor may not have an answer. But the bottom line is that beneath the disruptive behaviour is a smart and sweet kid and no matter the diagnosis or lack of one, will always be my little sweet heart. Take care, this place is great I'm glad you are here. Day

              Comment


              • #8
                I think my 4 year old son has tourettes please help

                I was making myself to upset. I love my son and I need to be healthy for him
                How is this a contradiction? I have a 7-year old daughter, who looks like she got a double helping of OCD. My fears and worries and anxiety and all of that ARE a healthy response. If we did not care, we would not worry, and we would be bad parents. Keep worrying, but in moderation - let the small stuff slide - and keep looking for answers. I would LOVE it if we did not need this forum. I would love it if I did NOT have Tourette's, if nobody did. But that is not the world we live in.

                Trust your instincts, and trust your child. Get a second opinion. Heck, get 100 opinions. And read the forums and web sites. Not for medical data - but for personal data. I write my web site mostly to set a TONE for talking about TS+, and to change the paradigm for thinking about TS+. I know we must cry sometimes, but why not use the other emotional tools, like laughter and companionship? Surviving TS+ is about putting together a team around each Touretter.

                You do not have to be the whole team - let the experts do their jobs - but you have to hold the team together. That is not about intellect or knowledge, it is about sheer willpower. And the touchy feely stories are the recharger for that battery. I once saw somebody use the 'emoticon' <h> to mean a hug. And of course, there is also the <H> big hug.

                <H> Good luck.
                Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
                http://www.facebook.com/tourettetiger

                Comment


                • #9
                  I think my 4 year old son has tourettes please help

                  About your little boy not smiling much anymore....

                  I was diagnosed with TS when I was 7. I was diagnosed with clinical depression along with that. It's very common for the two conditions to go hand in hand. My parents told me later that they noticed an extreme change in my behavior around the age of 4 or 5. They said I used to be a bubbly happy child. Then I just got very serious and stopped smiling. Now we know that was the onset of the depression, which was holding hands with the TS.

                  I can't say for sure if your son has TS. But I found the similarities between him and my childhood experience interesting.

                  And don't feel bad! If your son does have TS, it's not so bad There are challenges along the way, no doubt. But he will grow up to be a functional human being with a great personality, a wife, kids, white picket fence, dog, the whole bit. A person can still thrive with TS. Their lives are just a bit more..."colorful" shall we say?

                  Good luck!

                  Comment


                  • #10
                    I think my 4 year old son has tourettes please help

                    If your son does have TS, it's not so bad
                    Hear, hear! I like the message, KWhitlock!

                    I have TS and about 6 other definable disorders, almost all genetically linked to TS. Depression is not on the list, because it does not have to be. Tourette's Plus attacks our bodies and minds, and delays our development in many ways. In my mid-30s, I can now say (with chagrin) that it also prematurely ages you. I would be worried about someone who sloughed this off with no emotional involvement or pain. What child wants to be unique? None, really, when you get deep down. We are tribal animals, and TS+ flies in the face of tribal norms. I am not a hunter nor a gatherer. I am a Touretter. :-)

                    I need to write this down some time, really, but the single most important thing that helped me was not anything you can get in a prescription, although if I could I would be a billionaire: unconditional positive regard. My parents (Mom and step-father) raised me to believe that I could fix anything I set my mind to, and that I could outlive the stuff that was out of my control, like the opinions of strangers. They never judged me by my symptoms - they always treated me as amazingly wonderful.

                    I wish I could say I have no idea how to compare that to something else. Unfortunately (or maybe not) I had another set of parents who showed me the other side of that mountain. They never AGREED that I had Tourette's. How arrogant is that? How much did they miss ME in that statement? Neither of them were doctors or even clinicians - they were both career computer 'technicians', albeit very competent ones. I actually had Storms at their house on a few occasions when they tried to convince me I did not have TS. I showed them - I had a rage attack! You can not believe how funny that is to me now. "You want proof, I'll give you proof!" Ha ha.

                    Back to depression: we're depressed. We know we are different, and we know we are always going to be so. This is not a bad thing. It is just a thing. The Buddists would probably ask why we are so sad that we know ourselves so well. Knowing or not knowing changes nothing in their eyes - I have TS, and my reaction to that fact is MUCH MORE IMPORTANT than the fact itself. Think back to my Dad and step-mother. They rejected me by fearing something they did not understand or want to accept. So they lost ME, completely. Sad for them - I am a terrific person. Strange - bizarre - hyper - opinionated - obnoxious - but a terrific person.

                    I guess I need to find the end here somewhere... Parents, keep loving these kids, and do not give them a single moment to consider any other option. YOU hold their egos together until they get to be adults. The depression is normal. Don't get me wrong - get the professionals on your team and FIGHT the symptoms of the depression - but don't fight the WHY behind the TS depression. Yea, it is a tough call, and a hard thing to separate out, but trust your parental instincts - and TELL the kids that you love THEM, even as you fight the disease, and you'll help them live through all this.

                    Remember always: the goal here is for the kids to grow up and have healthy and happy children of their own. Someone once said you can see the parent in the children. Um, no, not completely. Try this: You can see the parent in the grandchildren.
                    Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
                    http://www.facebook.com/tourettetiger

                    Comment


                    • #11
                      Re: I think my 4 year old son has tourettes please help

                      Thank you all for your great advice.
                      I thought I would update you all on my now five year old son.
                      Last summer his head and neck movements continued to worsen. He was unable to stand upright at times. We noticed it was much worse after meals - and as the day went on. Finally in November our pediatrician ordered a milk scan. He had nine periods of high reflux during the test. He was then referred to a GI Doctor. Our neurologist viewed one of our tapes of our sons movments- and he felt he may have something in his esophagus causing him to move this way.
                      This past year he has had many investigative procedures. He has esophagitis, and ulcers in his esophagus. He refluxes into his mouth constantly. He lost four pounds this last year. Medication has failed and his last scope showed his esophagus is in very poor shape. Our son will be having a fundoplication surgery to stop the reflux this fall. Our neurologist feels that it is most likely Sandifer syndrome- which I researched myself and questioned the Doctors about. At first the doctors told me no- because it only happens to babies. I was able to get a case study of a four year old boy from Pittsburgh and I gave all the doctors copies. They all feel this article is right on the money-but only time will tell. Right now we are focusing on helping his reflux -and hopefully him feeling better. If his movements persist - well- after reading all the great replies , I now know that life will go on - with all its great ups and downs.
                      Thanks to all of you for your support-especially your encouragement kwhitlock

                      Heath

                      Comment


                      • #12
                        Re: I think my 4 year old son has tourettes please help

                        Hi Heath,

                        Thanks for the update!

                        I am happy that your son is getting the help that he needs.

                        You are a great advocate for your son!

                        Keep in touch.

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