When Alisa Yaffa and her husband suspected two years ago that their son might have Tourette syndrome, they brought him to his pediatrician for a professional opinion.
What they got instead was a diagnosis that didn’t sit well: Their son, the pediatrician said, was just fine.
“The doctor said, ‘Don’t worry about it. He’s just doing it for attention. He’ll stop,’ ” said Yaffa, referring to her son’s mild tics (involuntary, rapid, repetitive movements and vocal outbursts). “It’s unfortunate, but Tourette’s is a very misdiagnosed and under-diagnosed disorder.”
A neurologist eventually diagnosed him with the disorder.
To assist parents and caregivers in the Bay Area who might be facing similar dilemmas, Yaffa is starting a monthly support group that will provide support and education, build awareness and help remove stereotypes.
The first meeting is 4 to 6 p.m. Sunday, April 5 at Congregation Beth Jacob in Redwood City. Yaffa, who is a member of the Conservative synagogue, is asking that only adults attend the first session, though there will be future opportunities for children with the disorder to accompany their parents to meetings.
Included on Yaffa’s list of goals for the Peninsula group is helping the national Tourette syndrome organization raise money to fund pilot studies of potential medications that would curb the symptoms of Tourette’s.
At the initial meeting, Yaffa plans to play an educational video about the neurological disorder, which will touch upon symptoms and show examples of children who exhibit a wide range of tics, both motor and vocal.
Yaffa hopes the video will provide an “aha” moment for those parents with children not yet diagnosed, or for those possibly in denial.
“People don’t want to admit diagnosis,” Yaffa said. “There’s a stigma there. Every parent wants his or her child to be perfect. Nobody wants to admit to themselves that their child has issues.”
Parents will have a chance to talk about their children, discuss how their family manages symptoms and express what they’d like to get out of participating. Yaffa is expecting more than 20 adults at the first meeting.
What has worked for Yaffa and her 9-year-old son (whose name she preferred not to give) was building a solid relationship with his teachers at Gideon Hausner Jewish Day School in Palo Alto.
In an effort to make the classroom a more comfortable environment for him and his classmates, her son chose to stand in front of his peers (most recently his fourth-grade class) and talked about his disorder. He’s done that every year since being diagnosed two years ago.
Yaffa said her son tells his classes that he “does certain actions called tics because he can’t help it.” He also explains that the tics are not contagious, a common misconception among the students.
“It takes a lot of fortitude on the part of the child to do this,” Yaffa said. “The child may be disruptive in class because of the tics. The others may notice. Cooperation with the teachers and parents is so important because the tics can change over time.”
In addition to exhibiting certain tics, Yaffa’s son has some mild signs of obsessive-compulsive disorder. Other children can display signs of attention deficit hyperactivity disorder. Both are associated with Tourette syndrome.
According to the Tourette Syndrome Association’s Web site, symptoms of Tourette’s appear during early childhood or adolescence before the age of 18. Some 200,000 people in the United States are known to have the disorder, with all races and ethnic groups affected. Among Jews, Tourette’s seems more prevalent among those of Ashkenazi descent, Yaffa said, though research isn’t yet conclusive.
The first signs are usually involuntary movements of the face, arms and limbs. The most common first symptom is a facial tic (eye blink, nose twitch, grimace). There are also verbal tics, including grunting, throat clearing, shouting and barking.
Most people with Tourette’s and associated conditions will lead productive lives and can anticipate a normal life span, according to the TSA.
Yaffa wants parents to understand that they are not alone in trying to cope with the disorder. “I want people to realize that there are more affected kids than they think,” she said. “Tourette’s is a journey. Every year will be different. This disorder is not deadly, but it changes all the time.”
The Peninsula Tourette syndrome support group will hold its first meeting 4-6 p.m. Sunday, April 5 at Congregation Beth Jacob, 1550 Alameda de Las Pulgas, Redwood City. Contact [email protected] for information or to RSVP.