Thursday, November 30, 2006

Tourette's Syndrome

My eldest son, Luke, was diagnosed with Tourette's Syndrome three years ago. Actually the full diagnosis is that he has Tourette's, ADD and he's gifted. Since he was a baby, he was different, and for the most part we coped, but it was when he started school that the real misery started.

I think school was like torture for my bright and active boy. I remember participating in his junior kindergarten class and watching him during the circle time. The teacher was trying to get the children to tell her what number comes after 22. My son had his hand raised high in the air, but since the teacher knew he had the answer, she ignored him and tried to help the other children. I watched my boy's hand slowly get lower and his enthusiasm drain right out of him. By the end of her lesson, he was looking all about the room. Anywhere but the teacher.

We decided to try a French immersion school in order challenge him a bit. He had trouble focusing, his handwriting was atrocious, and after a while, behavior problems developed. At home, he would wake up with night terrors. In grade two we saw a behavioral pediatrician who identified Luke's giftedness, but who told us that there was nothing available to help him. By grade four, we had seen two more specialists, one of whom diagnosed ADD and another who diagnosed Tourette's. It seems like every label has stuck.

But the labels do help. It helps to know what books to read, what support groups to try out and that medication is really a necessity. Luke started taking Risperidone for the Tourette's and Concerta for the ADD. I hated to have to put him on prescription medication. But he really needs it. First of all, he didn't turn into a zombie. Instead, we began to see our boy shine. Luke has a humorous and creative personality. Second of all, he was able to cope with school.

The labels were also necessary for the school board to be able to give us some help. Luke entered the Steps for Success program where he learned how to meet the demands expected from him in the classroom and to improve his social skills. Being on medication made this experience more successful I believe. Luke really didn't enjoy the Steps program, but it made a world of difference.

Finally, we pulled him from French immersion and moved to a new home with a new school. At our new home, he has friends in the area who come over all the time. Before medication and the Steps program, Luke felt that he had no friends and that nobody liked him. Now it is such a joy to have our house filled with six kids on a Saturday morning, all carrying on and making a heck of a noise. The new school has been very supportive and accommodating and we have finally seen a decent report card come home.

Today, we went to see Dr. Duncan McKinlay, who is a very well known psychologist, specializing in Tourette's Syndrome. It's his specialty because Dr. Dunc has Tourette's! Even though things are going well for us at home, I still had a lot to learn from Dr. Dunc.

For one thing, I learned that Luke's tics are pretty mild. Luke picks at fuzz, he says funny words, like "Pie!", he fidgets a lot and sometimes he will lick his lips till they look sore. Dr. Dunc shakes his head, and snorts. Often when we are trying to say something to him. Then I noticed Luke had stopped picking fuzz and was starting to twitch his head! I thought "Rude boy is copying the doctor, and he's going to pretend he's learned a new tic!" I mentioned it, right there in front of Dr. Dunc, and the doctor told us that it is common for people with Tourette's to pick up each others tics. He said that at conferences, you can tell who has been hanging out with each other because Bob will be doing John's tics and vice versa. So that's a second thing I learned.

We also got some validation, that we are doing things right, and that the medication is still necessary and may be for the rest of his life. So I just want to say a big thanks to Dr. Dunc for seeing us today and to encourage everyone to go and see his website: Life's a Twitch!


  1. Laurie, I am glad that your boy has a wonderful Mom like you to make his life so full. Sounds like you have come up with a plan and it is working. There is a man very near us who has Tourette's and he has difficulty at times. It is hard to be with him at a meeting, as you realize he is trying to control his outbursts and tics. You seem to have a boy who will turn into a fine young man and handle life as it comes at him and his family! Best of luck!

  2. what an incredible blessing to have a dr with knowledge. i always wind up having to educate the dr on what ever is going on!
    sounds very promising. and an example of hope for your son.

  3. Anonymous7:48 am

    It sounds like you have dealt very well with the challenges that have faced you and Luke. It's nice to read such a positive story!

    and I went to the web site and Dr. Dunc is a real hunk!

  4. Anonymous9:33 am

    Never feel like you have to explain why your child is on medicine. Our eldest daughter has ADHD, OCD, depression and high anxiety. When a parent watches the torchure that they go through until medines are the correct balance - the reward of seeing your child finally happy again is worth it. We spent many years starting at Kindergarten through about 3rd grade trying to could get people to listen. Our eldest has finally graduated from high school. I remember well meaning people telling me that she needed vitamins, minerals, a kind heart... they never knew how much we exahusted every effort before we settled on meds. And I never did figure out how parents were able to get doctors to just perscribe it - I never saw it passed out like candy. Holy cow - all the steps and doctors you visit and continually visit... oops - ranting.

    Let me say, congratulations! your son is very lucky to have wonderful parents. I know of the road you walk, and please know that many have and are walking with you.

  5. It's so hard to be a parent sometimes, eh? Good for you for working so hard to give your child the right support. It sounds like you got some great information.

  6. Oh, my gosh. I totally choked up when I saw this post. Good for you guys. People don't understand how much of your heart being a parent takes. I love the idea of all of those kids making noise at your house! That was just great.

  7. Good for you and your husband for rising to the challenges life presented and meeting them head-on in support of your boy. And kudos to Luke for succeeding in the midst of obstacles. :-)

  8. How wonderful for you and your family to have the support and help you son needs to cope with life. I wish you all the best and that Luke continues to improve and succeed!

  9. HEY! Welcome to my club!
    My son (6yo) is gifted, Tourettes, ADD and a little OCD. Have you read about Magnesium too? We thought it wasn't helping until we ran out. HA!

    I salute you and your hard work! We had one (decent) pediatrician who said, very seriously and honsestly, "Look. This is all up to you. No one on my side is going to be able to put ALL of the pieces together, so be prepared to do a lot of reading and a lot of advocacy. And ask quesitons!"

    You're doing yeoman's service. Give your boy a hug for me and take a giant hug for yourself. You deserve more than that!

    All the best

  10. A very high-functioning friend of mine (seriously, he's a total overachiever and a rock star in his field) has very mild Tourettes--he blinks a lot in a pronounced way. But until he told me I wouldn't have known--I just thought he had chronic dry eyes!