Complex set of tics making Dylan’s life much more difficult

If you ask him, “How are the tics? Are they bothering you?” he will shrug and say, “I don’t know,” but that’s not quite true. He’s 13 – the tics are intense and he can be driven to tears at times when he feels powerless to control his body or his thoughts. If Tourette Syndrome was his only problem, though, life would be much more manageable.

My son Dylan has a combination of challenges that make life difficult for him and those around him. Our first concerns, when he was in preschool, were social problems. The preschool teachers were worried because he didn’t play with the other children. We suspected he was on the autistic spectrum, possibly Asperger’s because of his advanced verbal skills. A pediatric neurologist suggested “pervasive developmental delays.” His lack of social awareness definitely complicates things since he doesn’t care that his behavior bothers other people.

We took Dylan to so many doctors, trying to find answers. We were concerned about his lack of understanding of social cues and about his attention and impulsivity problems. I read that 70 percent of children with Tourette Syndrome also have ADHD. He is one of those. Honestly, the ADHD symptoms cause a lot more problems in school and in the world than the tics. In second grade, he got pulled out of PE for sometimes wandering away from the group and other times spitting on, punching and pushing other children.

We have been through the roller-coaster of medications. There were those that helped with attention but made Dylan unable to eat or sleep. In sixth grade, medication made him less impulsive but he was falling asleep in class and struggled to walk half a mile. Some meds seem to control the tics a bit, but I sometimes wonder if the medications do much good. The way to test it is to take him off – then the tics and impulsivity go through the roof. I feel like we’re medicating him to keep him out of trouble. He tends not to hurt other students when he’s on ADHD meds. Continue reading