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  • :thinking: Now What?

    I'm feeling kinda stuck and would love some ideas. I have a neurological appt for my son (just turned 11) but it's not until Aug 28th. My family dr has limited knowledge about what is going on with my son. The only suggestions he has is giving him something to calm his anxiety. He seems to think the tics are caused by stress. Anybody heard of this? I know they are worsened by stress but can stress cause tics?
    I feel that things at home are going fine but school is nasty for him. The teasing and bullying is nasty. I have been talking a lot with the school and the school is being very supportive but it still feels horrible sending him to school as I know it is very hard for him. I have been doing some research and heard that a lot of children with TS have a problem with exploding. My son has been very good up until recently with only having blow ups at home. Now he has had some minor ones at school. I am concerned that the school will change from supportive to treating him like a behaviour problem if he starts having blow ups at school. Also my son hates himself when he blows up. He is such a gentle and loving child that hurting anyone physically or emotionally is really upsetting to him. I just wonder if he is being pushed beyond his ability to control himself.
    Anyway I just wondered what other people did when they were between drs and had no clear direction from a professional. I feel like I am making blind attempts to help my son. I have been reading none stop but I would still feel better with some professional advice. I have started up a support group in my area. (there isn't one any closer than an hour and a half drive from where I live. Our first meeting we have a guest speaker who is a college student with TS and his parents.
    I guess I'm just one of those people that need to be doing something proactive intstead of just sitting and seeing what happens. But I don't know what to be doing.
    Thanks for listening.

  • #2
    Re: Now What?

    Hi Isamoma5:

    What we have found helpful is regular appointments with a private psychologist. We have been seeing a Cognitive Behavior Therapist for 7 years now.

    The reason we first started seeing a private therapist was the waiting time for the psychiatrist at the TS clinc. Unless we are in crisis we can usually only see him once every 3 months. He has 400 patients and runs the only TS clinic in our city. He has a nurse that we can talk with on the phone when needed but it is not quite the same as an hour appoinment.

    The private option fills in the gaps for us. We see him anywhere from weekly to about every six weeks depending on the severity of my son's issues at any given time.

    If you have a health plan it may cover some of the expense if this is a route you want to try.
    Last edited by mom2TSguy; April 16, 2007, 09:49 PM.

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    • #3
      Re: Now What?

      My son also has fortnightly psychologists visits.....

      Maybe it is worth checking out, he loves his fortnightly sessions.\

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      • #4
        Re: Now What?

        I know how you feel. The waiting makes you crazy. My son was just diagnosed with TS and the psychoeducational assessment that was done the FALL before took 4 months to get the results. That assessment said that my son MAY have Asperger's.

        It is frustrating and nerve racking to sit and do nothing about it... i was in the same situation. Maybe just read some books, that's what i did... I read up about things and the professionals were surprised on how much I knew.
        CRYSTAL

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        • #5
          Re: Now What?

          Hi isamoma5

          It can be tough in between appointments. Track as much as possible for the appointment in a journal so that you have a history of behaviors, storms, tics and their duration and complexity, so you are ready for the questions the specialist will ask. It is so difficult to retain everything that happens if you don't journal.

          As for your question, stress can not cause tics but like you said stress can increase the frequency of tics. If your son is exploding in school when he didn't before you need to find out what is triggering him. You need to manage the symptoms regardless of the diagnosis and you need to assume that the behaviors are symptoms first.

          The school needs to understand that the exploding is referred to as "storms" and if you could share info on storms with them would keep them on the supportive side. Am I safe in assuming your son has an student support plan in place? Is so you need to have an action plan in place for behavior management NOT behavior modification. This would include a place for him to escape to if he is feeling upset or frustrated or an adult or "go-to person" or "caring-adult" in the school he can go to if he is feeling upset. Graceful exits are critical for our kids especially with the demands of the school environment.

          I think it is great that you are taking the lead to start a support group because having a buddy system is how you as a parent will stay grounded. Please stay connected with us and we will provide as much support as possible.
          Janet

          TSFC Homepage

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          • #6
            Re: Now What?

            Thanks everyone for your support.

            Hippygal As for psychologists appts.... we live in a very rural place and have to travel for at least an hour to see one. Also the wait lists are up to a year. We are going to a ped's dr right now and dr's are hesitant to set up more than one referal at a time. But I will definately talk to the ped's dr to see if that is a support I can use.

            chasesmom .... reading and researching is actually how I have been copeing. The problem is I am running out of material. I've read what the library has and have to order if I want something from the bookstore. If you have any suggestions on books worth purchasing let me know.

            Janet I'm not sure what a student support plan is. I am having a hard time with the school as they are very supportive and trying very hard but it's not working for my son and I can figure out why. I don't think they understand completely what he is going through. Just last week I kept him home for 4 days and his tics were awful and he was crying. (I even had to take him to a chiropractor for the pain in his neck) When he came back to school his teacher had a "talk" with him on the importance of being at school. My son doesn't need to be stressed right now about missing school when he is missing school because of the stess of being there. AHHHHH! Anyway we are just plugging along taking it one day at a time. Thanks for listening everyone!

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            • #7
              Re: Now What?

              I know what it is like to be in a rural community. I used to live in one that only had 1 Dr. If you needed any specialists you needed to drive 8 hours to Winnipeg!!! You drove 2 hours for a dentist or even a psychologist. I can relate to that completely.

              isamoma.... as for books, you probably read more than me. I just ordered Hi, I'm Adam. It's a book geared for 4-14 year old that explains TS. My son is 7 and I read him the book I CAN'T STOP but it was too long for him.

              I am currently reading Children with Tourette Syndrome, A parent's guide (Second Edition) by Tracy Lynne Marsh. I think it's one of the better ones I read.

              Sorry I am not much of a help. I did ask people for a list of books that they thought I should read and it's posted in the forum. That might help you. Good Luck!!!!
              Last edited by Steve; April 28, 2007, 06:05 PM. Reason: fix smiley
              CRYSTAL

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              • #8
                Re: Now What?

                OOPS!!! That Thumbup1 was supposed to show a smiley. HA HA!!!
                CRYSTAL

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                • #9
                  Re: Now What?

                  The thumb up smiley isn't in the list of message smileys (unfortunately at the moment) only as a messsage post icon.

                  I'll see if I can migrate that smiley.
                  Steve
                  TouretteLinks Forum

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                  • #10
                    Re: Now What?

                    Don't worry about it. It's not a huge deal.. I found it under [more].
                    CRYSTAL

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                    • #11
                      Re: Now What?



                      Smileys are important, and I'll try to get us a couple more thumbs up
                      Steve
                      TouretteLinks Forum

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                      • #12
                        Re: Now What?

                        Thanks!!! I love using smileys!!!
                        CRYSTAL

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                        • #13
                          Re: Now What?

                          I fixed the one in your original post. For some reason it was missing the formatting.
                          Steve
                          TouretteLinks Forum

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