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  • concerned about our son

    Hello everyone, I have spent so much time going through the postings on many of the forums. I am just wondering if someone could help me out. Our son has just turned 5, and for the last couple of months we have noticed many new and different movements that he is doing. So far we have seen frowning, lip puckering, tongue thrusting, shoulder jerking, and a great deal of head and neck jerking. He has in the past made a lot of snorting noises but we thought he always had sinus issues. Our son is a pretty active little boy, smart as a whip and never focused on anything for long. He also is unable to stop touching certain things even when repeatedly asked. His Jk teacher is concerned as is the gym teacher who seems him once a week. They are quite sure it is Tourettes syndrome. I have made a Doctors appointment for him but I don't really know where to go from there or even what to explain to the doctor. I videotaped my son when he was really ticcing and plan to bring that with me. Does anyone have anymore advice? I am so thankful that this forum exists. I have been on this site quite a bit in the past few weeks.

  • #2
    concerned about our son

    Hello Jill and welcome to the TSFC Forum!

    You have made the right first step in having your son evaluated by your physician.

    Is the physician you will be seeing your son's pediatrician or another specialist.

    As you may have surmised from other discussions, you want your son to be evaluated by a physician who has been adequately trained in Tourette Syndrome, as not all physicians have had sufficient clinical training to make a competent diagnosis.

    You can ask the doctor outright is he/she has a professional interest in Tourette and movement disorders. It's a legitimate question to ask, and a conscientious physician will refer to a specialist if he/she does not have the training for a competent diagnosis.

    Once you have the diagnosis, then get in touch with a local support group which can provide you with local information and tools to assist your family.

    In what part of the Country re you located?

    When talking with the doctor, explain your son's behaviors exactly the way you did here. A doctor with professional interest in movement disorders will know the questions to ask in order to make the diagnosis.

    Gathering information as you are doing will empower you when discussing your son's condition with your doctors.

    My only caution about videotaping your son would be concern about how he might interpret being observed and recorded. People with Tourette quickly realize they do things which might attract attention, so your support and reassurance with him will reinforce his self confidence and lessen his embarrassment.

    Click Here for definitions concerning Tourette

    Use our Forum as a resource and feel free to ask all your questions here.
    Steve
    TouretteLinks Forum

    Comment


    • #3
      our son

      Thanks you so much for your quick response Steve and for your valuable advice. I will ask our family doctor about his experience with such issues and I know that he will send us elsewhere if he deems it necessary. We have an older son with anxiety and OCD and our family doctor was great in that situation. We live in Barrie and I am unsure of what sort of support systems exist in this area. I would be interested if you know of any. As for the videotaping, I can totally understand your point and as my husband and I have discussed, we will work very hard to ensure that our son is never made to feel embaressed or ashamed of his behaviour. We have decided that we will treat this with as much normalcy and positivity as we can. In fact our son has this wonderful way about him in which he really doesn't care what anybody thinks, he will tell you exactly how he feels about a situation, or a person and is quite a confident little boy. In fact is favourite response to any compliment is "I know". I have videotaped him so much in his life that he doesn't even notice anymore. I made sure to tape him this time when he was playing a computer game and wanted me to tape him getting the answers right. I would appreciate however, any advice that you have on how to keep our son from feeling the effects of some of the more ignorant members of society. thanks so much, it is so wonderful to have this support and assistance.

      Comment


      • #4
        concerned about our son

        Jill,

        you have on how to keep our son from feeling the effects of some of the more ignorant members of society
        I don't believe there's much we can do with badly mannered ignorant people. The fact is we cannot change the behaviour of others, we can only control our own behaviour.

        However, by providing your son with information in the form of a prepared and rehearsed explanation of his Tourette will equip him to deal with most situations.

        You might role play with him, so that when he encounters a situation where he needs to give an explanation, he can explain he has Tourette Syndrome, and his tics are involuntary.

        You may wish to get a copy of the Q&A brochure from the office of the TSFC which he can carry or print out the document I referred to earlier to give people an overview of Tourette.

        There are a number of Forum members in and around the Barrie area, Click Here and you may wish to post a message with the word Barrie in the title to get their attention.

        Here's a list of the TSFC contacts

        You may also wish to call the TSFC National office for an up to date contact in Barrie.
        Steve
        TouretteLinks Forum

        Comment


        • #5
          concerned about our son

          Welcome Jill

          We have several TSFC chapters across Canada so check out which one is closest for you. Here is the list of affiliates . The TSFC is located in Toronto so feel free to contact the office and one of our staff will certainly let you know what resources may be available in your area.

          Journaling is one of the best ways to keep track of what is happening with your son. By the time appointments roll around you may find it difficult to recall everything you want to share. It is also a great way to record questions that you want to ask so that you don't forget to ask once in the doctor's office.

          Continue to read the various discussion threads and post any questions or comments. There are many people here who are ready to listen to (read) your story as well as share theirs. The people who participate here have a tremendous amount of information/ best practices and strategies to offer.

          hope this becomes a regular place to stop.
          Janet

          TSFC Homepage

          Comment


          • #6
            concerned about our son

            Just wanted to say Hi.

            Hi Jill! *waving*

            :D

            Comment


            • #7
              concerned about our son

              Jill:

              Welcome to the TSFC forum! I am glad you found us and your experiences are much like others.

              Janet and Steve have given you some wonderful advice and you know that you have a better understanding of TS you need to focus on making the home a strong "safe zone".

              This means acceptance 150% by all the family members, no attention given to the tics and sitting down with your son and listening to his questions and pulling some good reading material based on his age to help him understand that it is alright to be himself.

              Unfortunately it is very hard to control others opinions or responses in public about any disorder. We have experienced this first hand.

              I would recommend that you print some information from this website for his teacher and let her know that you are having your concerns evaluated by the Doctor. Most teaching professionals do not have a strong background in TS so this material would be helpful for her to monitor the situation too.

              If you find that TS is the diagnosis, a in service program can be provided in your school to help others understand.

              In our own case we had to educate our family members too, so don't be surprised if you do not see the support you need right away from aunts/uncles or grandparents. If it has become noticeable to them, then pull out the reading material and review together so they have a better understanding too.

              Please keep us posted on your progress. You are very fortunate to be so close to Toronto. There are others on this forum that have been to the TS Clinic @ Toronto Western.
              PJK

              Comment


              • #8
                A diagnosis already

                Haejinn, hi back and thanks for making me smile

                PJK:

                Hi there thanks for the response and for mentioning many of the things that I am concerned about. We were at the family doctor today and he himself said that after listening to my own observations and seeing my son he believes that our son does have Tourette syndrome. Is that unusual to have a family doctor make a diagnosis that quickly ? He examined my son and asked a few questions to rule out any other reason for the tics my son has been having. I did have that video that I made with me which seemed to be a big help, although my son was also doing some mouth and neck tics during the exam. Our doctor recommended that I leave things for a bit and continue to read and gather as much information as I can. If my sons tics become more disruptive or problematic for him we will then move forward to specialists etc. So far my son seems pretty unaware of what is going on, he knows that when he lets the tics go he feels better and I explained today that he has something that lots of other people have, and that it makes them want to move or make sounds in different ways to make themselves feel better and more comfortable. He was content with that and we are all feeling quite positive and good about things for now.
                As for family, some members do not want to admit that Tourette syndrome is even a possibility and some are making it into more than it needs to be right now. Any information that anyone has about how to explain this to family and how they can then help would be greatly appreciated. I honestly don't know what I would do without this forum and I imagine this will be a great source of support and help in the next little while.
                Thanks so much
                Jill

                Comment


                • #9
                  concerned about our son

                  Jill,

                  Thank you for your kind words about the Forum.

                  Is that unusual to have a family doctor make a diagnosis that quickly
                  If your physician has had a reasonable amount of clinical experience diagnosing Tourette, then based on your description of the interview, it does not appear to be unusual.

                  If you feel the need for a second opinion or for more treatment options you may wish to request a consultation with a specialist known to have a specific professional interest in treating Tourette. This specialist could be a neurologist or a psychiatrist as both specialties are known to treat patients with Tourette.

                  As for family, some members do not want to admit that Tourette syndrome is even a possibility and some are making it into more than it needs to be right now
                  Perhaps your physician can of assistance in informing/educating your family, provided they are willing to listen, to helpthem understand that sometimes it isn't just "bad habits or behavior", "stubbornness", or "drama".

                  It is also not unusual to see denial among family members.

                  "A member of my family couldn't possibly have something like this!"

                  Could it be fear?:

                  "I don't want this to be true so I refuse to let it be true."

                  Or, could it be about power struggles?:

                  "She thinks this is a problem and I hate/am angry with her so I'll refuse to accept this" .

                  Friends support friends in time of need, and the same should apply to spousal relationships.

                  If the family members in denial are willing to listen, you may wish to invite them to a Tourette support meeting, if they are willing to go. Don't be surprised if they refuse, however.

                  Would it be different if the situation were reversed or if the need for support was in connection with a medical issue like cancer or diabetes?

                  You may wish to use some of the documents available from the TSFC National office or Homepage to help inform family members.

                  Another helpful resource is the following printable overview of Tourette Syndrome.
                  Steve
                  TouretteLinks Forum

                  Comment


                  • #10
                    concerned about our son

                    Jill:

                    The information Steve provide is a wonderful start. Read up and provide small amounts of information to family members, like you did with your son.

                    They can only seem to take it in small doses when in denial.

                    Other family members can play up the diagnosis or idea of TS as I think you were trying to express. These are the most insecure about the concept and have limited knowledge about TS. They may know someone that has a child with it.

                    Every one has different experiences with their tics and different degrees of tics. Most people do not understand that at first. This is were the drama comes in.

                    I had to educate my sister in-law (nurse) to defuse the worries she created with my in-laws. The subject with her has been closed ever since but the rest of the family has now come to accept it and understand.

                    The first step is understanding what TS is, the second is all the vocal & motor tics associated with it, the third is what you child is experiencing now. Keep it simple and they will come around and become the supporter in time.

                    You may want to ask your school to do a in-service or have them do a in-service for the teachers on a PA day. In some areas this program is available. Your local chapter is a good start to help you with this process.
                    PJK

                    Comment


                    • #11
                      concerned about our son

                      Hi Jill:

                      If you read my previous posts, you'll see that my situation mirrors yours. In short, my son will be turning 5 next month, and has had many of the same symptoms as your son. Back in November, my family doctor and a pediatrician (no specialized interest in TS) both saw him and told me that they feel that he has TS.

                      I had my pediatrician fax over a request for consult to Toronto Western Hospital -- they have a Tourette's Syndrome clinic in which specialists can diagnose TS, as well as help with many resources and counselling. I am currently on the waiting list for an appointment (they told me that the wait could be up to 4 or 5 months). By the time I get my appt., he will have had his symptoms for about one year.

                      If you can, just visit their website (sorry, I don't have it on hand right now, but it is in one of my previous posts, or just google Toronto Western Hospital) to get more information. It's very easy to navigate. You'll just need to get your pediatrician to fax over the request for consult.

                      This time since November has had its share of ups and downs, but I too have found this board so helpful, and am so glad for the support. Please post or PM me if you would like to talk. I live in Milton.

                      Take care,

                      Sandra

                      Comment


                      • #12
                        concerned about our son

                        Sandra:

                        Great to see you again and thank you for providing some personal insight to Jill's situation.

                        Other's experiences make all the difference trying to manage and learn through the long process in the beginning.

                        It is true that the system is slower then we would like but I am personally thankful for the resources we have here in Ontario and the GTA area.

                        Hope things are going well for you and look forward to seeing you back on the forum.

                        Take care,
                        PJK

                        Comment


                        • #13
                          concerned about our son

                          Hi PJK,

                          I've been lurking...never too far from here!

                          Thanks for your post...I just want to clarify that I, too, am very thankful for the support and information that a place like Toronto Western can provide. The length of the waiting list just goes to show that there are many people out there with possible TS, but that there are specialists available to help. I'm so grateful for the existance of places like TWH as well as this forum!

                          Sandra

                          Comment


                          • #14
                            concerned about our son

                            I agree with you about TWH. We are going Thurs for a final check up with my son as they took him off of Seroquel slowly so they can start him on Prozac for his OCD issues. It was our family Dr that first mentioned Tourettes. Our ped. Neurologist agreed but it was the Tourettes Clinic at TWH that confirmed it and we had to wait almost 5 months to see Dr Sandor and Dr. Pringshiem. We had to fill out a huge booklet of questions and I realized through this that I had some OCD issues as well. But the questions only confirmed TS. They figure they will increase his Risperdal as well. The only thing I found disappointing was that they said they didn't need to see the video as they could observe my son doing his tics and habits. Only one psychiatrist and our neurologist watched the video. Our visit at Sick Kids confirmed that he did not have epilepsy but agreed with TS but also movements uncharacteristic for TS. So I will be bringing this report with me to TWH. Also I now have 18 questions to ask them as I write them down when I think of it. It is very helpful. As for family members, I told them and no one has asked any questions. All my mother said was "oh dear". AT Christmas when Glenn did his habits you could see some of them turning their heads so as not to watch. But my son just kept on visiting with them, either he didn't notice what they were doing or he just didn't care. I was quite happy on how he handled it. At 16, I think I worry more of what people say about him than I do.
                            Rose

                            Comment


                            • #15
                              Thanks Sandra and PJK

                              Hi there, I just wanted to quickly say thank you for advice concerning family members and how to help them deal with this diagnosis. We are about to have many family get togethers over the next little while and it feels good to have some tools to help explain to everyone what is going on and how they can both inform themselves and support our son. It brings such comfort to read other posts from people who have similar stories to ours. This is so new for us and I am just trying to read and learn and gather as much information as I can. thanks everybody.

                              Comment

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