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Thread: Hello! New to the forum and Mom of 7 year old just diagnosed with TS!

  1. #1
    Join Date
    Mar 2014
    Location
    Canada
    Age
    51
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    9

    Default Hello! New to the forum and Mom of 7 year old just diagnosed with TS!

    Hi everyone! So happy to become a member of this forum and of the Tourette Syndrome Foundation
    My son was newly diagnosed with Tourette's Syndrome a few months ago. He is an only child and will be 8 years old next month. My son has mostly vocal tics which can be very disruptive to the classroom. His tics have changed in the past few months from high pitched barking noises to low "Ah" "O" sounds. They are very repetitious, especially when he is under the weather, anxious or stressed. He has also been diagnosed with anxiety. We are still waiting to hear about an appt with a psychiatrist from the Tourette's Clinic, but I'm pretty sure he suffers from ADHD and OCD also. I just ordered a bunch of literature from Amazon so I can learn about his triggers and help him to cope. I also ordered some children's books so I can take one to his class and read it among his peers to help them understand what is going on with my son.
    We have seen a pediatrician who has put him on Risperidone for his tics and Prozac for his anxiety. He has been on these medications for a couple months now and he seems to be tolerating them well and helping him cope a bit better.

    I am really getting frustrated with the school he attends because they don't seem to be helping much and don't seem to understand the needs of a child with Tourette's. My son has had some anxiety with school and its a battle Monday mornings especially to get him there. He really dislikes school this year and I don't know why. I don't know if he is playing, or if its real sickness, but he told his teacher he was feeling sick and needed to go to the bathroom. I got a phone call from the school to pick him up because he was sick and I said that he was fine, he's not sick, he just doesn't want to be at school. The teacher emailed me and basically said that he was being disruptive and she couldn't teach her class because he kept telling her that he needed to use the bathroom to get sick. She also told me that next time he does this he should be sent home and spend the day in his room (with the door closed and lights off) if he is sick. I don't think she is aware of the problem with Tourette's and how it affects children. I know with my son, I just couldn't throw him in his room all day with the door closed, he would have a major meltdown, sick or not!! I just wished she would see where he was coming from and be a bit more patient and I also wish the school would be more on top of his needs. I have already talked to the principal about this when my son was newly diagnosed 2 months ago. I am not receiving alot of feedback from the school unless its negative as to what is happening week to week, which I requested 2 months ago also. I am hoping the more educated I become about Tourette's the better I can help his teachers understand my son's needs. So here I am! Looking forward to my journey with all you great peeps, and hoping I can help somebody else along the way going through the same things as we are! If anyone has any recommendations, I would be very grateful, thanks!!

  2. #2
    Join Date
    Oct 2007
    Location
    Paradise, NL
    Posts
    74

    Default Re: Hello! New to the forum and Mom of 7 year old just diagnosed with TS!

    Welcome! I'm absolutely no expert, but I wonder if it's sort of true that he's feeling sick. If he's got some anxiety going on, he could be feeling a bit nauseated - a bit of "Fight or Flight". He might not be actually sick per se, but I suspect it would feel like it for an 8 year old.

  3. #3
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Hello! New to the forum and Mom of 7 year old just diagnosed with TS!

    dmkumhyr,

    Welcome to the TSFC Forum and thank you for joining us.

    You have covered a great deal of history in your post and every point my not be addressed initially, but can be as the discussion progresses.

    You mentioned your TSFC membership...have you been in contact with your local Chapter for support, particularly with in-service education for your son's school? Most Chapters have trained in-service presenters who can speak to the teachers, principal and students to help with their awareness of your son's special needs.

    Matt may well be on the right track, that your son, at his age of eight, may not have an adequately developed sense of self awareness to accurately articulate his symptoms, and his explanation of discomfort or malaise is being misinterpreted by his teacher. Self awareness usually matures and is developed in children in the age range of about eight to twelve, so that might be one of the factors limiting is ability to accurately describe his symptoms.

    Self awareness is also an important factor in dealing with and by extension managing Tourette symptoms, which may also be at play.

    A pediatric psychologist, preferably one with clinical experience with children with Tourette Syndrome might be a valuable resource for your son at this time.

    Have a look around our Forum at the various sections to locate the resources we have posted and feel free to join in any of the ongoing discussions.

    Since you are looking for reading material, check out the books available from the TSFC. Also we have listed a number of books on Tourette and related disorders HERE whhich we update regularly. If you discover something of interest we have not posted, feel free to add it to the list.

    Additionally I would refer you to the website of Dr. Leslie Packer PhD, a TSFC Forum member and recognized authority on Tourette and related disorders.

    Have a look at SchoolBehavior.com and Tourette Syndrome Plus both of which, I believe contain information related to the issues you have raised.

    I just couldn't throw him in his room all day with the door closed, he would have a major meltdown, sick or not!!
    Agreed..and if it was the same teacher who has been at the root of your son's other issues, you may have an important clue as to why he is having difficulty and resists wanting to go to school. It sounds like that teacher is missing some important awareness information and may require some crucial in-service retraining on Tourette Syndrome and special needs children.

    How is your son's environment at home in connection with his symptoms, relations with other family members, playmates and parents of playmates?

  4. #4
    Join Date
    Mar 2014
    Location
    Canada
    Age
    51
    Posts
    9

    Default Re: Hello! New to the forum and Mom of 7 year old just diagnosed with TS!

    Thanks Steve and Matt! Sorry for the late reply! I will take a look at those websites!

    My son is fine at home, he does have some vocal tics when he is doing things that trigger them like being on the computer etc. but other than that he always feels well, never complains he is sick, very energetic and happy. Its only when he has to go to school he is very unhappy and complains of illness. He relates well to friends and family members. He has been on prozac and respiradone for a couple months now, he seems to be tolerating them well at small doses. He also seems to be getting better at controlling his anger and problem solving at home and school, he is alot happier and more agreeablel. I will definately look into getting an in service presenter to speak to his teachers and students! That sounds wonderful, I didn't know that they could do that! I will contact them soon! I have also ordered some books for myself and a few children's books I can take to the classroom and read to the children to help them understand too.

    On another note, the teacher finally helped me out with a problem going on and he seems a little bit better going to school. He didn't like a certain class he had to take (by himself) to learn spelling in computer lab so she decided he could do it every other day instead as long as he stopped giving me a hard time about going to school and not missing anymore days being "sick". It has helped a lot this week, he hasn't complained about going to school at all! Matt, I know what its like to feel sick because of nerves, I too suffer from anxiety problems so I agree that the "sickness" may be a true symptom he is experiencing!

    Thank you so much Matt and Steve, you have helped tremendously!

    Donna

  5. #5
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Hello! New to the forum and Mom of 7 year old just diagnosed with TS!

    . I will definately look into getting an in service presenter to speak to his teachers and students! That sounds wonderful, I didn't know that they could do that!
    The "in-service" training program is one of the most valuable and successful programs available to members of TSFC to increase awareness and to provide support for children living with Tourette in our schools.

    Hope it helps!

    Sounds like there is an understanding teacher at the school as well...that should help once they have the right information about Tourette.

    Keep us posted on progress!

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