“Tourette Under Control” — I’m in the newspaper!
Hi everyone! I wanted to share with you an article in a Netherlands newspaper in which I appeared recently! It, of course, was written in Dutch, but I’ve translated it into English for you. Enjoy!
Gilles de la Tourette is a tough disorder, especially for children. Usually, they get antipsychotics to control tics. However, with behavioral therapy, there are very good results as well. Due to this therapy, Laura Beljaars went from 300 to about 60 tics per 15 minutes.
“To some people, 60 tics per 15 minutes is quit much, but they’re not that noticeable. I tend to tense the muscles in my arms and legs and move my back”, the 24-year-old college student says.
For Laura, Tourette appeared when she was about 8years old.
“Back then I started to rotate my eyes, the tic I have the most. First they thought it was something psychological or a mild version of epilepsy. But when I was about eleven years old, a neurologist diagnosed me with Tourette Syndrome,” she said.
Like many children, Laura got medication. These antipsychotics are not at all intended to use for this tic disorder, but help to repress the symptoms.
“Unfortunately, the side-effects of these meds, often can be severe with children”, says Dr. Cara Verdellen, clinical psychologist and head of HSK Expertise Tics. “You can think of severe weariness and weight gain. For boys, there’s even the possibility of growing breasts.”
Laura suffered of these side-effects as well.
“I tried two kinds of medication and the tough part was that I was constantly hungry and kept eating all the time. That’s real tough, for a girl in her teens. But the worst part was that the tics didn’t go away,” she said. “At the age of 13, I had 300 tics every 15 minutes. I was so unhappy! A big part of the time I couldn’t see because of the rotating of my eyes. A neurologist in training then suggested behavioral therapy.”
After 1 1/2 years of medication it took three months of therapy with Cara Verdellen to help the young Laura tremendously.
“I almost didn’t have tics anymore. How can I explain it? The urge to rotate my eyes is like a fly walking down your arm. You have to get it off. I had this itch all the time in my eyes and other body parts,” she said. “I had to rotate my eyes or do another tic in order to get rid of that feeling. Cara thought me to put up with that itch and to wait until it would go away. That takes a lot of determination: it’s not a fun therapy.”
Psychologist Verdellen recognizes that, but adds: “If the side-effects of the medication are worse than the actual ailment, as parents, you have to do some thinking. Some children turn into zombies because of the medication, according to their parents. And with that, many clinicians don’t know that according to the European guidelines, behavioral therapy is the first choice of treatment for tics. In reality, however, it’s almost never offered to the patient.”
For college student Laura it is clear: “I hated my Tourette. Before the therapy, I was a weepy fat girl that didn’t notice anything else but her tics. But now, I can go to college and I can even teach. Eventually, I came to see the good parts of the disorder. People with Tourette have much more empathy with other people, they are creative and can speak very well. Right now I’m children’s coordinator of the Tourette Syndrome Association (Stichting Gilles de la Tourette). I want to pass on this positive attitude. If the diagnosis is set, it’s not the end of the world.”