Heather Weaver first noticed her daughters facial tics during a Christmas program in Kindergarten, when her daughter reacted to the stress of being on stage by contorting her face.
I remember sitting there in the middle of all the other families feeling like I was dying inside because something was terribly wrong with my baby, said Heather. At that point, I had no idea what it was or what to do about it. I just knew something wasnt right.
Over the next couple of days, Heather and her husband, Joe, started to research tics and began examining old home videos featuring her daughter, Eliana.
Looking back, I realized that Eliana had exhibited one type of tic or another from the age of 2, said Weaver. I was pretty sure that Tourette Syndrome was a real possibility, so I made an appointment with Eliana’s pediatrician. After some basic medical testing to rule out other neurological conditions, that diagnosis was confirmed, and we were referred to Akron Children’s.
That year, Eliana’s tics were fairly mild and they didn’t impact her quality of life at all.
In fact, most people never noticed them, said Heather. Because of this, we decided to forego any treatment and see how things progressed.
Tic disorders are more common than you might think. Tics are relatively sudden, brief and repetitive involuntary movements (motor tics) or sounds (vocal tics) that may be simple (blinking, nose twitching or grunting) or complex (a facial grimace combined with a head twist or repetitive words or phrases). They may last for a brief period or continue into adolescence and adulthood.
An estimated 1 out of 100 children between the ages of 5 and 17 have a tic disorder or Tourette syndrome, said Dr. Katrina Lindsay, PhD, NCSP, director of the Tic and Tourette Service at Akron Childrens Hospital. These conditions may be disruptive to a childs life and can be frequently misunderstood by others. They might impact a childs relationships with friends and family, interfere with school or work, and even pose harm to themselves if they have with more severe motor tics.
Tourette syndrome is a type of tic disorder that involves both motor and vocal tics. Its common for those with Tourettes to have another condition such as attention deficit hyperactivity disorder (ADHD), anxiety or obsessive-compulsive disorder (OCD).
As Eliana got older, instead of getting better, the tics worsened and multiplied.
My first tic was a shoulder shrug, said Eliana. Throat clearing was next. Then I got a cough. Then I started an eye roll. Next, I tried to pull my eyeballs down with my tongue. Just recently I got a vocal tic similar to a parrot squawk.
Stress can trigger tics. Heather and Eliana were increasingly worried about her husbands worsening health. Joe had battled severe epilepsy his whole life and was facing a brain surgery.
The next couple years of our life brought some pretty severe stressors, and Eliana’s tics increased in severity, said Heather. That same summer, Eliana’s school closed down, and she was also facing being the new kid. School is very important to Eliana.
Eliana started seeing Dr. Lindsay, who implemented a proven therapy called Comprehensive Behavioral Intervention for Tics (CBIT).
CBIT teaches people to change their behavior over time and tic less. A study by the National Institute of Mental Health found CBIT to be more effective than basic supportive therapy and education.
Dr. Lindsay says CBIT has 3 components:
- Teaching children to become more aware of their tics
- Training them to perform a competing behavior when they feel the urge to have a tic
- Making changes in daily activities that can reduce the number of tics
As a mother, I am most appreciative of the empowerment CBIT has given me, said Heather. Prior to our time with Dr. Lindsay, I felt so helpless, which is the worst feeling for a parent. We tried to just ignore the tics, hoping they would go away. It never worked.
CBIT has given us the tools we need as a family to face them head-on and develop plans to address them, she said. While some tics are more challenging than others, the confidence we gained through CBIT allows us to face them together. We often quote the title of a video that Dr. Lindsay let us borrow: I Have Tourette’s, but Tourette’s Doesn’t Have Me.
Dr. Lindsay suggests at least 6 weekly, 60-minute sessions.
CBIT has been incredibly helpful, said Heather. We saw an 80% decrease in Eliana’s 3 primary tics during the 8 weeks we worked with Dr. Lindsay in CBIT. We keep our CBIT family binder on our bookshelf and refer to it regularly when a new tic pops up that we want to address.
Just last week I ran more copies of our tic tracking worksheet so that Eliana could take it to school with her to help us become more aware of how often and under what circumstances a new tic is occurring, she added. Interestingly, we also see an increase in tics every year in the months leading up to Christmas and summer! We’ve learned that even anticipation of fun things is considered eustress (good stress) and can affect her tics.
Tics and Tourettes isnt holding Eliana back from her dreams. Now a third-grader at South Elementary School in New Philadelphia, she thrives in her gifted classes. She takes a weekly drama class at a local fine arts center (Adonai Fine Arts Center) and is participating a summer drama camp at our local Little Theatre of Tuscarawas County.
One day on the 60+-minute drive home from therapy, she thought of a spoof of the song “Seasons of Love” from Rent that features 525,600 “tics” rather than minutes. Listen to her sing below.
Also, she hosts of her own YouTube channel, featuring science experiments and also frank discussions about her tics and how she deals with them. She even provides an online tour of her relaxation room, a former closet area that now offers a respite from daily stressors.
I had been watching YouTube for about a year and I asked mom if I could have a channel, said Eliana. I have always been a science girl. I love discussing nature things and experiments. I wanted to show other people what science can show you. When I first heard that I was going to do CBIT, we watched YouTube videos to see what it might be like.
Eliana took CBIT for 8 weeks during April and May 2017. She graduated from the program May 26, 2017.
I don’t know how to describe Dr. Lindsay other than by saying that she is absolutely amazing, said Heather. Our family had been through some really rough times in the year leading up to meeting her, and having a safe place to talk about some of those things together helped us process them and empowered us to have similar conversations later at home. Dr. Lindsay is amazingly skilled at listening and connecting with children and their families. She honestly changed our lives, and I will be forever grateful.
Watch a tour of her new Relaxation Room, which was created as recommended in CBIT therapy