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Thread: I am new here!

  1. #1

    Default I am new here!

    My son was just diagnosed with Tourette's last Friday. He is 8 and in grade 4. He has a wide range of tics but the worst is the loud vocal screaches. I just got back from meeting with the Principal and VP at his school and they are lost. I explained it all to them and they asked me to ask him to obstain from the loud vocal noises while in class. Is this possible?? From reading I know it is possible for short amounts of time. They have agreed to have someone from the Tourette's Foundation come in and talk to the teachers but don't feel it is necessary to do one for the students? I don't agree and if problems continue I guess I will have to ask again. At what point to you turn to medication? His psychologist has put him on Sequel (sp?). Do you think this is right or should I wait? Should I be teaching him to obstain? Or should I just wait for him to do that on his own? He also has ADHD. Which he wants to medicate him for later after we find the right med for him for the Tourette's. Is this wise? Sorry for all the questions I am just a little overwhelmed at the moment. Any advice would be appreciated.

    Thanks, Leah

  2. #2

    Default I am new here!

    Hi LeahAJ
    Read your note....I know what you are going thru. My son is almost 12 and was diagnosed with Tourettes when he was 7 and in grade 2. He has mainly had minor motor tics, but shortly before school started he developed vocal tics. Swearing, and also muttering. When he is really ticcing, sometimes he can hardly talk....just nonsense comes out, and then he will finally manage to say what he wants to say. Some days he is OK, and hardly has any, and other times they are very bad. He is worse at school, and he cannot seem to hold them in. He says he can't help it...
    He also has ADHD. He is on medication for that, and it definitely helps....but the side effects are he loses his appetite, and has trouble sleeping. We are now trying something for the vocal tics, but I am not sure yet if it will help. It's tough on everybody. We also are having a hard time with our school understanding this. My son's teacher has him out of the classroom with an aide for almost half the school day, which my son hates, because he feels he is missing out on what is going on. Our local TS chapter is great, we get a lot of support from them. Good Luck and hope things work out for your son.

  3. #3

    Default I am new here!

    Does he have a problem with the volume of his vocal tics? Is he able to do them more quietly? Just wondering because my son's school wants him to tone them down. Is this something that is possible? I don't want to ask him or try to force him to do something he cannot do.

    Thanks, Leah

  4. #4

    Default I am new here!

    Hi Leah
    Yes, my son does seem to be able express his vocal tics more quietly than what he would. when he tells me he can't help it, I try to encourage him to tone his voice down. It wouldn't hurt to try it.......
    It does make you feel awful when you've punished your child, and then you realize it was a tic and they couldn't help it. My kid has had a lot coming his way from teachers, friends, etc. telling him to stop it, it's just a bad habit, etc...you can't blame them for getting frustrated.

  5. #5

    Default Have an in-service for the students

    Hi:

    I'm one of the people that provides in-services for the TSFC. I would strongly recommend that you have an in-service for the students in your child's class.

    The other kids are going to notice the tics -- how could they miss a screech? It is far better if they understand the reason your child tics. That way they are going to be much more supportive.

    My son also has a tic that causes a screech. When the other students in his class understood why he did the things he did, they found it much easier to overlook. When the other kids in the class don't know about the TS they tend to get frustrated with the TS student and make fun of him.

    Ask the person who is doing the in-service to talk to the teachers about doing an in-service for the students. The teachers will have a different perspective once they learn more about TS in the classroom.

    Cathy

  6. #6

    Default I am new here!

    That is what I figured also. I am hoping that once they receive the inservice themselves they will see how important it is for the kids to learn too. The school sent him home again today. The medication is making him very drowsy and they say they can't teach him in that condition. So they sent him home with homework and I had to find a sitter and go back to work. GRRRRRRRR I hope this side affect wears off fast!

    Leah

    Also I forgot to add that in class today he was quite creative in covering the screeches LOL He told me that he would move his chair so that it made a sound and screech at the same time or that he would wait till the teacher was talking to squeal. Although I am quite sure the class still heard the tic it makes him feel more comfortable.

  7. #7

    Default I am new here!

    Leah please view my previous post under teasing. It is definitely a GREAT idea to have your child's classmates educated about TS.

  8. #8

    Default i'm new here also..

    Hello everyone! My son is 14 and was diagnosed 8 yrs ago......after struggling with many differents symtoms i'm finding that every few yrs he developes new one that replace the previous. When he was six his tics were a problme as well as his adhd symptoms. Now that he's a teen we're noticing some rage issues and having a real problem finding a physician who can help. J's been on ritalin since six, and recently changed to Concerta because his school wants no part in making sure he takes his lunch time meds (very frustrating)! although this works well for his concentration.....his rage is becoming a problem. I'm in Victoria, BC and am having great difficulty finding a Pediatrician who has enough experience to help him or give us options to consider. As far a as i know the few doctors who were capable of effectively treating TS are no longer here. Is anyone else having physician problems and are as frustrated as i am?

  9. #9

    Default I am new here!

    I am sure you will find that problem no matter where you go! It is hard to find good doctors that truly understand TS. Alex is off all meds now. We tried him on Serequel and Orap and the side affects were horrible. Since his tics don't seem to be interfering with his daily life and the kids at school seem to be used to it we are just going to let him tic for now. It doesn't seem to bother him much.....just the people around him LOL. His pediatrician says to me the other day "this is not good.....look at him tic...." I don't understand this. It is not bothering him so why medicate him? We are waiting to get into Regional Children's Centre here in Windsor, Ontario. Once in he will get a full assessment and perhaps some psychological testing to see what help he needs in school. So things seem pretty calm here for the moment.

    Leah

  10. #10

    Default I am new here!

    I am new here too. I am anticipating a diagnosis of Tourettes for my 4.5 year old son. We have an appointment with our GP on Wednesday and will be referred hopefully. I am pretty sure my son does not have ADHD, is this a must for Tourettes? My son has been "shuttering" for close to 2 years and in the last few months has definite tics and has an elephant noise he does. The worst times for him are driving in the car and when he is happy excited like scoring a goal, anticipating a surprise etc. If anyone could suggest a good Neurologist in the Vancouver, Richmond Delta area in BC I would be greatful, actually I would travel anywhere.

    I do want to comment on LeahAJ child's school. I am a little shocked that they asked if he could be quiet in class. I was pretty sure most people are aware of Tourettes these days to a certain degree. The kids need to be taught acceptance, our school has kids with various conditions and the kids are surprisingly wonderful about them.

    Also, a month or so a go I watched a program with a man who had terrible tics, no vocals. He couldn't even walk down the hallway at the hospital his tics were so bad and sitting in a chair was non stop movement for him. He went to a Dr who tried the Parkinson's surgery that stops the tremors on him and it worked, he was a new man, tic free. Did anyone see this program, I can't remember where I saw it but it might have been on TLC. I would like to know when it might be on again or where I might get a copy or info on it.

    Thanks.

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