Friday, June 07, 2013

Siblings learn to cope with Tourettes Syndrome





 Lara Hamilton remembers the day vividly.  Her happy active daughter Bailey started having strange movements that her mother had never seen.
"This happened basically overnight,” said Bailey Arnett’s mother Lara Hamilton.  “The tics started.  I didn't know what was going on.  She couldn't stop moving."
After a few doctor visits, Bailey was diagnosed with Tourette Syndrome when she was 6 years old.  Now nearly 15, the movements or tics are not always as noticeable. She pops her wrists, head and shoulders sometimes to the point of pain.
"Since I have joint popping for my tics they hurt when I do them way too much, and I'll be incapable of being able to write," Bailey said.
Bailey's 13-year-old brother Tanner also has Tourette Syndrome. It usually runs in families.  Bailey and Tanner’s father has symptoms of TS, but it never was diagnosed. The two young people are completely comfortable explaining their conditions to their friends.
"I tell them it is involuntary movements that you can't control, and it causes a lot of stress,"  Tanner said.
Tanner also pops joints in his body, mostly his wrists and ankles.  He also has one of the more common tics associated with TS, blinking often and shifting his eyes rapidly. 
The involuntary movements, or tics, are just a part of TS.  People diagnosed with it have both vocal and motor tics.  Many people with TS have Attention Deficit Hyperactivity Disorder, learning disabilities, sleep disorders and Obsessive Compulsive Disorder.
"You feel like you have to do something and your body just makes you do it,” Tanner said.  “I just turned the light switch off to my bedroom and your body is telling you no you didn't do it right, so you got to go back and do it again."
The National Institutes of Health’s Fact Sheet on Tourette Syndrome states TS does not affect intelligence.  The first symptoms usually show up between the ages of 3 and 9.  Boys are affected three to four times more than girls.  It is much more common than you might think.  As many as 1 in 100 people have milder symptoms like chronic motor or vocal tics.  There are medications to control tics and conditions like ADHD and OCD, and behavior therapy is showing promise.
Tourette Syndrome can be hard to understand, and it is not always easy to live with.
"In 6th grade there was a girl that bullied her," Hamilton said.  “She didn’t tell me for a month.”
Bailey also experiences a lot of anxiety at times that medication helps. 
“Without the medicine I cannot function,” Bailey said.  “I cannot sit still. I can't be in a mall, because there are too many people.  I will start freaking out.  I will tell my mom I can't be here anymore. We have to leave. We have to leave now, because there's too many people. It's so claustrophobic for me.”
When her children were first diagnosed with TS, Hamilton said she felt like she lost them.  She knows now she has gained so many blessings.
“I've never been mad that this happened at God,” Hamilton said.  “I've always tried to find the blessing in it, and I've always tried to find a way for my kids to advocate for themselves.”
Hamilton wants everyone to see how TS children can thrive through all the confusion and challenges.
Her son Tanner is a blue belt in Taekwondo and a natural artist.  He has a sketch book full of drawings that he says helps him express his emotions.
Bailey, an inspiring actress, has had several big roles in school plays and musicals.
"When I'm up on stage getting to do these things I don't feel like I have Tourette's anymore,” Bailey said.  “My tics don't really appear anymore.  They're kind of gone when I'm doing what I love most which is acting.  I'm doing this to prove having Tourette's Syndrome doesn't limit you from doing what you love to do."
Lara, Bailey and Tanner consider their lives nothing short of normal.  It may be a new normal for this family, but it has endless possibilities.

“Gilles de la Tourette syndrome (Tourette Syndrome or TS) is a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years.  Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year.  The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk.  These tics are frequent, repetitive and rapid.  The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs.” 
“These involuntary (outside the patient's control) tics may also be complicated, involving the entire body, such as kicking and stamping. Many persons report what are described as premonitory urges -- the urge to perform a motor activity. Other symptoms such as touching, repetitive thoughts and movements and compulsions can occur.”

Read More

No comments:

Post a Comment

Pages