Finding her voice

As a fourth-grader, Sydney Stahl boldly stood before Immanuel Lutheran School and said she has Tourette syndrome.

It wasn’t easy, but it made things easier for her.

“She has never had any type of issues, and I think it’s because she said, ‘This is what I have,’” her mother, Misty Lang, said. “She needed to tell her school so people wouldn’t make fun of her. We wanted to confront it and let everybody know.”

Kids at school didn’t make fun of Sydney, Lang said. Instead, they asked questions about the syndrome.

“Girls having Tourette’s is more emotional because of the outlook and what people think of you,” Lang said. “It’s not life-threatening, but it’s something she can outgrow. But probably not until age 18 or 19 for her.”

Sydney started showing signs when she was 7 and was diagnosed with the neurological disorder as a 10-year-old. She is now 14.

Tourette syndrome is characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.

“When she was 7 years old, we started noticing that she was having some issues, like clearing her throat,” Lang said. “It was constantly, and so we just thought she had allergies. But she couldn’t get a full night’s sleep because she would wake herself up by clearing her throat. And one of the teachers noticed that Sydney was tripping at school, like falling, so we thought it was her eyes.”

Sydney visited her local doctor, who sent her to some other doctors. She wound up at Riley Hospital for Children in Indianapolis; and after two hours with Dr. Laurence Walsh, she was told she had Tourette’s.

Sydney learned Walsh also has Tourette’s.

“When he came back into the room after all the testing and said, ‘Yes, she does have Tourette’s,’ I cried,” Misty Lang said. “Sydney didn’t cry, but the first thing she noticed was, ‘Mom, he has Tourette’s, too.’ Kids with Tourette’s can pick up on other people who have it right away.”

Sydney clearly remembers that day, and she picked up on Walsh’s symptoms.

“He had these big glasses on, and he would crinkle his nose and move his eyebrows,” Sydney said.

Family weighs options

Walsh wanted to put Sydney on medicine, and he presented her with four options. Sydney and Lang returned home and talked

it over.

Lang became emotional again when her daughter told her she was ready to start medicine.

“She started noticing the tics were getting worse,” Lang said. “We were kind of letting her make that choice of when she knew it was affecting her life, then let’s start the medicine.”

Years before the diagnosis, Lang remembers punishing Sydney for some of her actions.

“She couldn’t keep her arms still,” Lang said. “We couldn’t go to a movie theater without her putting her arms in the air. I’d be like, ‘Sydney, stop. People are behind you.’ She didn’t know she was doing it.

“And it was moving her neck and just kind of tapping her face, sticking her hands out the window (of a car) and pushing the locks up,” Lang added. “Her mind was telling her, ‘This might hurt, but I want to do it.’ It was part of her tics.”

Some people with Tourette’s experience verbal or vocal tics, while others have motor tics. In either case, they don’t know they are doing or saying certain things.

“I had no idea that I do it at all,” Sydney said.

The National Institute of Neurological Disorders and Stroke says tics are often worse with excitement or anxiety and better during calm, focused activities.

Sydney said she has had a few issues with her tics coming up at school.

“I notice sometimes that it will be worse some days,” she said. “I’ll go to the bathroom and just see what I’m doing in the mirror and stop myself. I remember (Walsh) telling me, ‘Just notice what you’re doing and try to stop,’ and so that’s what I do.”

Playing sports helps

While participating in volleyball at Immanuel, however, Sydney said the tics don’t come into play.

“When I play volleyball, I don’t do it,” she said. “There’s too much to think of to even have to do tics. Whenever I do (volleyball), I like it a lot because I don’t have to worry about

Tourette’s. I just can forget about all that stuff, and I get to be with my friends.”

Sydney was one of the volleyball team’s top players this year. She made the Lutheran Invitational Tournament all-tourney team, recorded 108 kills and 33 aces and helped the Warriors finish the season with a 19-3 record.

Mindy Roeder and Brad Henry were her volleyball coaches. Roeder said she wasn’t aware Sydney has Tourette’s, while Henry knew. Neither, though, ever noticed Tourette’s affecting Sydney on the court.

Roeder said she sees “mounds of potential”

in Sydney.

“Her peers look up to her, and her natural athletic ability cannot go unnoticed,” she said. “She has size and coordination. Sydney is passionate about volleyball and was a joy to coach. I look forward to seeing her grow as a player through her high school years. I know she will do great.”

Lang said she liked watching her daughter on the volleyball court.

“Her eighth-grade year has been the best year ever for Sydney, and we needed that for her confidence,” Lang said. “She has shined, and it just amazed me about her ability. She’s finally got it, and she’s not letting anything get in the way of her doing what she loves. That’s all we want her to do is be a good kid. If you want to play sports, give it your all and don’t let anything set you back, even if it’s Tourette’s.”

Continuing treatment

The only time Lang has been worried about her daughter in sports is when she tried out for cheerleading.

“They make you walk out, and you have to stand still,” Lang said. “Sydney is the girl that can’t stand still. So I have to always go before they have the tryouts and say (to the coaches), ‘Sydney has Tourette’s. She can’t stand still.’”

Sydney has made the team every year, but she has had to overcome some barriers.

“She is doing back handsprings at cheerleading, but her mind is telling her, ‘I know I can do this, but I am scared to death,’” Lang said. “Her brain is telling her, ‘Don’t do it. You’re going to fall.’ It’s knowing that something could happen, and it just makes you overthink.”

Sydney said she fell one time and hurt her neck. Lang, though, has helped her feel comfortable and confident by videotaping her doing certain skills and then showing it to her, proving that she can do it.

Every six months, Sydney goes to Riley for an appointment, and she must miss a day of school.

“It’s like a checkup at first, and they ask you questions about how do you think (Tourette’s) is and did it get better, did it get worse, do you need more medicine,” Sydney said.

When Sydney started taking the medicine, Lang said, it would take almost an hour to get her to take a pill because her mind was telling her not to put it in her mouth. It made Sydney a little sick at the beginning, but her body became used

to it.

Sydney also has to carry an EpiPen at all times. According to epipen.com, that is an auto-injector that contains a single dose of epinephrine for the emergency treatment of life-threatening allergic reactions caused by allergens, exercise or unknown triggers and for people who are at increased risk for these reactions.

“Sometimes we feel like we’re walking on eggshells, but I’m like, ‘If this is what we have to deal with, then we’re dealing with this,’” Lang said.

‘Use this as something good’

Lang said there’s a possibility Sydney can grow out of the tics. Walsh, though, has yet to outgrow his.

“We have turned this into everything positive because there are girls in our community that have cancer her age,” Lang said. “We were like, ‘Let’s have this. Let’s just never think bad of this. Let’s use this as something good.’ We use her for showing people that you can do anything and be beautiful because Sydney is very beautiful and she has a lot of people who look up

to her.”

Looking back, Sydney said she is glad she got up in front of her school and talked about Tourette’s. She now knows of another student at Immanuel with Tourette’s, and she wants people to be aware of it.

Lang said their goal is to raise money and participate in the Tourette Syndrome Association’s marathon that is conducted each summer at Disney World in Florida. That would take about $5,000.

“That’s our goal, to get there one day to run for Sydney,” Lang said. “I’ve done two marathons, and I always run for Sydney.”

Next year, Sydney plans to attend Trinity Lutheran High School in Seymour and wants to continue with volleyball. She is never going to let Tourette’s get in the way of her favorite sport — or anything else in life.

“It’s not set her back,” Lang said. “We have high expectations of Sydney. She can do anything, and I want Sydney to always know that no matter what we face that we still expect her to do her very best.”

At a glance

Tourette syndrome is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.

The early symptoms are typically noticed first in childhood, with the average onset between the ages of 3 and 9.

Males are affected about three to four times more often than females.

It is estimated that 200,000 Americans have the most severe form of Tourette’s, and as many as 1 in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics.

Although the cause of Tourette’s is unknown, current research points to abnormalities in certain brain regions, the circuits that interconnect these regions and the neurotransmitters responsible for communication among nerve cells.

There is no cure for Tourette’s, but the condition in many individuals improves in the late teens and early 20s. As a result, some may become symptom-free or no longer need medication for tic suppression. While it is generally lifelong and chronic, it is not a degenerative condition. Individuals have a normal life expectancy.

Source: National Institute of Neurological Disorders and Stroke

Author photo
Zach Spicer is a reporter for The (Seymour) Tribune. He can be reached at zspicer@tribtown.com or 812-523-7080.