Childhood Tourettes Syndrome: One Family's Story

It all began benignly enough. In January 2004 I noticed my six-year-old son, Kage, shaking his head frequently.  It almost seemed as though he was being pestered by a fly or was trying to clear his thoughts. After I first noticed it, I dismissed it as something that kids do sometimes.

We home school and at first I thought Kage was shaking his head because he was having trouble seeing. I immediately scheduled him for an eye exam and discovered that he was farsighted and needed glasses for reading and computer work.

Aha! This must be the problem! Or so my husband, Sam, and I thought.

Eventually, though, Kage’s head shaking became more pronounced and complex. Instead of a quick side-to-side shake, he began scrunching up his shoulders then throwing his head backward and forward in a woodpecker-like motion. He would do this, then go back to what he was doing, only to repeat the movement about 1-2 minutes later. Sometimes he would have one of these spasms every 30 seconds.

With the physical tics, he began making various noises - grunting, clearing his throat, and saying “Hmmm.” At first, his tics would occur a few times a day but eventually escalated to occurring every 30 to 60 seconds. Kage was finding it difficult to be a typical six-year-old boy because of them.

His motor tics would be so exaggerated that he would frequently complain of severe headaches and neck pain from shaking his head so vigorously. When I first began noticing these tics, I would mention them to Sam and he would insist it was nothing to be concerned about. I persisted.