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Thread: New to Forum and looking for support/advice

  1. #1

    Default New to Forum and looking for support/advice

    We are new to this forum and would like to get some ideas. We have an 8 year old son who has been diagnosed with TS+ about 3 years ago. It wasn't a huge surprise as several members of my wife's family have TS. It's been a rough road and things have become more challenging in recent months.

    Although his tics are really mild at this point in time, he has been diagnosed with ADHD (inattentive sub-type) and I would say this is by far the greater problem. Grade 2 was a real challenge. Although he is extremely smart (exceptionally so!) he might get 2 questions on a sheet with 20 done in the alotted time. We have been on top of the challenges right from the start, consulting with Dr. Dooley, had loads of testing done by a psychologist, including an educational assessment, met many times with the teachers, participated in the formation of a local support group, etc.

    Recently, our son's behaviour has become more challenging, with increased rage episodes, frequent impulsivity, almost non-existent patience, defiance, sound sensitivity to the point that school assemblies or going almost anywhere with an elevated level of noise are unbearable for him. He's a great little guy with a heart of gold. Every night as he gets ready for bed he transitions to his "true self". He expresses regret for things he has done through the day, expresses concern over things that frustrate him or bother him, talks positively about things he has enjoyed, etc. Its great to be able to spend that time with him...helps us end the day on a positive note. But the next morning and 90% of the rest of the day he's clearly struggling with his world.

    We have battled with ourselves over and over again on the issue of meds. We have researched, talked to others, read, debated. As things intensified we decided that it might be time to try that route. We got a prescription for Concerta filled but stopped short of trying it after reading the product pamphlet that said not to take if you have Tourette's as it may increase tics. Since our son's tics are very mild, we really didn't want to risk adding increased problems with tics to the mix.

    More recently, we have been considering Strattera. If anyone has any experience with this medication, we'd love to hear about it. I have noticed this drug referred to as a stimulant in a couple of places on this forum, which is confusing as the Strattera website states explicitly that it is not a stimulant.

    Also, we are attending the conference in St. John's in October and would love to hear from anyone else who is attending.

    Sorry for the long post, just wanted to put it all (or at least a lot of it) on the table. Looking forward to hearing from some others struggling with the same issues.

  2. #2

    Default Re: New to Forum and looking for support/advice

    Welcome unami68!



    I am so glad you found us! The symptoms you describe regarding the rage, frustration level, limited patience, defiance, sound sensitivity I am very familiar with. It is very hard to deal with these things as a parent. You have done the right things in seeking support. I love how you end your days! What a great way to decompress everyone after a stressful day.

    The sound sensitiviy was relatively easy for us to deal with at home once we figured out what the problem was. We purchased hearing protectors for our son to use at home or loud events. I could not even vacuum without the hearing protectors. With them he was fine. Some things like fireworks we just didn't go to. At school they put safety goggles on him and said they were his 'sound goggles'. Although they did nothing to filter sound they did work and he was able to attend assemblies. I am a bit on the fence regarding the sound goggles at school though as I am sure they did nothing to help him fit in with his classmates. He rarely uses his hearing protectors now and hasn't seen the 'sound goggles' at school since grade 2.

    The med question is something all of us parents struggle with. It is a very personal decision and you have to do what is right for your child and family. I would recommend that you find a doctor who has experience treating TS to help you through this decision. You can get a listing of professionals in your area through the national office of the TSFC. www.tourette.ca

    We decided to use a combination of meds and Cognitive Behaviour Therapy. The meds give him the boost he needs so that he can actually learn techniques to deal with his issues. It has really been a struggle but we have always seen a slow but steady improvement over the years. Our son is now 14 and WOW what a summer he had has so far! He went on a Cadet training course that was two weeks long away from home, he volunteers at the zoo, he has taken two other computer courses at the UofA. All of this with no involvement from me and all with "regular" kids. I was especially impressed with his selection to be a volunteer at the zoo. He contacted them, wrote a resume, and went for an interview. All I did was proof his resume, the rest was all him. As far as I know they have no idea that he even has TS.

    You will get there too. It takes time and a lot of work but it will happen. The fact that you are here tells me that you are willing to do the work. Your son is lucky to have a mom like you.

    My husband and I and my son will all be at the conference. This will be our third one. My son informed me that he would be at every single one after attending his first in Edmonton. I am so glad you will be able to go. Your son will absolutely love the children's program. Not only will he learn some useful strategies he will also meet others who have TS and have a chance to be himself without concern as to how others will react. He will also have a lot of fun!
    Last edited by mom2TSguy; August 12, 2008 at 12:47 AM.

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