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Raising a Child with Tourette Syndrome: One Family's Story

The Difficulty of Diagnosis
Sometimes, the answer to the riddle of a child's symptoms is elusive.
Sometimes, the answer to the riddle of a child's symptoms is elusive.

For starters, Tourette syndrome is a difficult condition to recognize and diagnose. Jaylen's mother, Robin, noticed his first verbal tic when he was still a toddler. Every time they were in the car together, he complained of a scratching sensation. She changed his clothing, diapers and car seat, but it didn't help. Doctors tested him for a variety of illnesses but couldn't find a physical cause for the scratching.

Jaylen soon exhibited one of the most common simple tics: repetitive eye blinking. An eye specialist examined him and found nothing wrong. Another tic soon followed that the family nicknamed "baseball signs" -- involuntary hand movements that look like a third-base coach's signals to a player during a baseball game. Again, Jaylen's doctors and parents remained stumped.

At age 3, Jaylen developed another verbal tic, a made-up sound similar to "Oh no." It was then that a pediatrician put all the clues together and diagnosed him with Tourette syndrome.

Jaylen's parents were crushed by his diagnosis. They worried about his health and the effect it would have on his happiness throughout his life. Jaylen's mother learned as much about the condition as she could, becoming something of an expert on it. She said that this knowledge of what her son was dealing with gave her a sense of empowerment and control. After all, parents have to take the lead in directing their children's care -- no one but you is aware of all the different doctors and diagnoses, not to mention insurance bills and your child's full medical history.

Next, we'll talk more about Jaylen's family and how they've learned to cope with the difficulties of Tourette syndrome.