- [Narrator] Kids with tic disorders
and Tourette syndrome often have a hard time fitting in
because their symptoms can be disruptive.
It's also difficult to find help
because there aren't many health professionals
who specialize in this area.
There is a nationally recognized hospital
right here in Northeast Ohio that treats these kids.
But in some cases, there is a two-year waiting list
to get into the program.
I'm Ideastream Public Media's, Anna Huntsman.
On most days, the Akron Zoo is a quiet place
when it closes down in the evenings.
(upbeat music)
- [Child] Mommy stop!
- [Narrator] But on a recent Friday night,
it was roaring with guests
at an event called T.I.C. Night Out.
- [Announcer] Welcome to the 5th Annual T.I.C. Night Out.
- [Narrator] A yearly outing for patients
being treated for Tourette syndrome
and tic disorders at Akron Children's Hospital.
♪ I remember when rock was young ♪
♪ Me and Susie had so much fun ♪
Elton John's "Crocodile Rock"
and other songs about animals blared
as the kids and their families hopped on the carousel.
(cowbell dinging)
- [Announcer] Cow farm, here we go.
- [Woman] Here we go!
- [Narrator] Or just monkeyed around
and made new friends while checking out the exhibits.
And just like the colorful birds.
(bird chirping)
And zebras with extraordinary stripes,
these kids are pretty unique.
The "T I C" in T.I.C. Night Out
stands for Together In the Community.
And the event was created
to bring patients and families together
as many children with tic disorders
often struggle to make friends
due to their unusual symptoms.
- [Allen] The first tics I had were the ones with my arms.
Like I'd take both of my forearms
and I would bring them both up at the same time to my chest.
We'd call that the velociraptor
because it looks like you're prancing around
like a velociraptor. (giggling)
- [Narrator] That's Allen Shoaff,
a recent high school graduate from East Canton
who has been attending T.I.C. Night Out
since its second year in 2018.
Shoaff has Tourette syndrome,
a nervous system condition
that causes patients to make repeated
and unwanted movements and sounds.
- [Allen] It was really frustrating
'cause we didn't know what it was or why
they were happening.
And we didn't know if they could stop.
- [Narrator] Akron middle-schooler Christie London,
a Tourette patient attending the event for the first time
says she is learning to overcome a swearing tic.
- [Christie] It was a vocal tic, "I eff'd your boyfriend."
It was probably one of my most interfering tics,
especially in like public spaces
where people don't know about my tics at all.
- [Narrator] T.I.C. Night Out is put on by Katrina Lindsay,
a Pediatric Psychologist
and Director of the Tic and Tourette Service
at Akron Children's Hospital.
She says there are not many specialty clinics like this,
despite a growing need.
- [Katrina] About 10% of kids experience tics
over their lifetime,
knowing that though,
we're the only standalone Tic and Tourette Service
within the region.
And so we have patients really coming from all sides of Ohio
and including jumping the state lines
to come to the Tic and Tourette Service
here at Akron Children's.
- [Narrator] But Lindsay says because of that
the service is hard to get into.
- [Katrina] There are not a lot of providers
that are trained in CBIT.
And so our clinic, it truly is overwhelmed.
Our wait list is like north of two years.
- [Narrator] Lindsay says patients can get
an alternative treatment while they wait,
such as medication.
Patients in the program undergo
a six-week behavioral therapy called CBIT
which stands for
Comprehensive Behavioral Intervention for Tics.
Lindsay says through the therapy
patients learn what causes their tics
and work with a doctor to come up with a new behavior
to stop the tic when they feel it coming on.
London's mom Tracy says her daughter got into
the CBIT program last year by luck.
A spot opened up after a last-minute cancellation.
- [Tracy] Christie was ticing nonstop.
I mean multiple times every hour in her sleep.
And the opportunity to participate in the CBIT program
has made all the difference in our lives
and functioning and social and school.
- [Narrator] Although Shoaff also completed CBIT,
he says his tics have worsened as he's gotten older,
but while his improvements might not always be
seen on the outside,
he says the program and events like T.I.C. Night out
gave him confidence on the inside
and helped him stand up to bullies
and educate his peers about this misunderstood condition.
- [Allen] I wasn't as depressed.
I didn't deal with things like suicidal ideation
or actions and things like that.
That was the whole improvement was the mental state
and going about just living life,
regardless of what the tics are doing.
Because even though they're getting worse,
I'm able to go out and live.
(upbeat music)
♪ What does the fox say ♪
♪ Ring, ding, ding, ding, dingeringeding ♪
- [Narrator] Lindsay says kids who are experiencing tics
can still see their primary care physician,
a therapist or a neurologist
to get medication or other support for their symptoms.
Even if there's not a specialty center
or CBIT program nearby or available.
To try to bridge this gap,
The National Tourette Association of America
is working to educate more doctors in CBIT therapy
by offering free training.
Anna Huntsman, Ideastream Public Media.