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Living with Tourette’s

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It started with a cough. My son, Augie, just shy of 4 years old, was recovering from a cold and had a persistent cough. Weeks went by and he was still coughing. We took him to the doctor, who suggested possible allergies. He gave us a few samples of Singulair and sent us on our way. Two weeks later, the cough just went away. No red flags. Kids do strange things all the time.

A few months later, we noticed Augie was constantly blinking his eyes. The optometrist found nothing wrong, so again we ignored it, and it went away. Same with the humming and odd breathing that he started shortly after the eye blinking. I’m a reference librarian by trade, so I started researching these symptoms. I learned that 10 percent of all children have childhood “tics” that are harmless. Just ignore them, and they will go away.

Then the stomachaches started, and the throat clearing got worse. We were referred to an allergist, who determined a tonsillectomy and adenoidectomy were needed. After the surgery, things seemed to improve. Augie had a symptom-free school year, but the tics were back once summer started.

By August of that year, we couldn’t ignore things any longer. Augie was blinking so badly that he couldn’t see. He couldn’t complete a sentence without clearing his throat. Sometimes when he cleared his throat, he would move his chin down to touch his shoulder. We went back to the doctor, only this time we weren’t told that there was nothing wrong; we were referred to a pediatric neurologist. Although there are many luxuries that are associated with living in Northern Michigan, close proximity to a pediatric neurologist is not one of them. The wait time to see a neuro at DeVos Children’s Hospital in Grand Rapids was four months.

Augie (left) and sister Nora (right) enjoy a Brewers game at Miller Park after the race.  Photo courtesy of Stacy Pasche.

Augie (left) and sister Nora (right) enjoy a Brewers game at Miller Park after the race. Photo courtesy of Stacy Pasche.

Four months is a long time to not know what’s happening to your child. My mother suggested Tourette Syndrome (TS). I laughed at that suggestion, as I was only familiar with Tourette’s from it’s portrayal in Hollywood. TS is flailing limbs and the shouting of obscenities; my kid just blinks, coughs, and moves his head. Tourette’s was the guy on that L.A. Law episode from long ago that I’m ashamed that my brother and I openly mocked (sadly, if you Google “L.A. Law Tourette syndrome,” the first result is a YouTube clip entitled “funny tourettes scene from 1989.” It wasn’t funny then and it sure isn’t funny now). I spent an entire afternoon researching Tourette Syndrome and soon realized I had a complete misunderstanding of the disorder. From all that I read, a strong suspicion was building that Augie’s symptoms fit the description for TS.

According to the National Institute of Neurological Disorders and Stroke, “Tourette Syndrome is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.” Although the disorder was first discovered in 1885, little was known about it in this country until the 1970s when the Tourette Syndrome Association of America was formed. Average onset for TS is between the ages of 3 and 9 years old. Symptoms increase and typically peak during adolescence.

When we finally saw the neurologist, my suspicions were confirmed – Augie was diagnosed with Tourette Syndrome during the fall of 2011. His symptoms were considered mild, and no treatment was deemed necessary at the time. We informed his teacher, who went above and beyond to make sure Augie was supported and had all the necessary tools that he needed to be comfortable at school. Then, the symptoms disappeared as quickly as they had started.

The waxing and waning of symptoms is normal with TS. In Augie’s case, it seems there are external triggers in the spring and fall that exacerbate his tics. We learned that waxing and waning of symptoms is not just limited to tics; people with Tourette Syndrome usually have what are called “co-morbid” conditions, the most common being Obsessive Compulsive Disorder (OCD) and Attention Deficit Hyperactivity Disorder (ADHD). By the spring of 2012, our normally happy little guy had turned into a sad little Eeyore. He would get off the bus and cry. He was overcome with separation anxiety. A visit to the psychiatrist told us that we were now in the Tourette’s Plus Club – Augie was diagnosed with OCD and a mild case of ADHD.

The tics are annoying, but we’ve learned that OCD can be just as bad, if not worse. While the tics take over the body, OCD causes Augie’s brain to get “stuck.” Minor disappointments become exaggerated in his head until he becomes so upset that he doesn’t remember what upset him in the first place.

The Tourette Syndrome Association’s Youth Ambassador program trains young people with TS, their siblings, friends, and classmates to speak about TS before their peers at school, sports leagues, camps, etc. We were fortunate at the time of Augie’s diagnosis that one of these ambassadors was living in Leelanau County. The Michigan chapter of the Tourette Syndrome Association is in the process of changing hands, and currently there is no support group in northwest lower Michigan.

We wanted Augie to meet some other kids with TS, so in the summer of 2013, we traveled to Green Bay, Wisconsin, to participate in a Tourette Syndrome Awareness walk. Wisconsin has a very active TS support network, with chapters in Green Bay, Milwaukee, and Madison. We had lived in Milwaukee for five years prior to moving to Northern Michigan, and Augie was actually born there. He was very excited to visit the home turf of his beloved Green Bay Packers.

While talking to the other TS parents in Wisconsin, I realized how similar all of our stories were. Many of us started with referrals to allergists or eye doctors. We are all upset that Tourette Syndrome is the only disorder still openly mocked and treated like a joke in the eyes of Hollywood. We recognize that awareness events like the one in Green Bay really matter. Research money is desperately needed to not only find a cure but also to better understand what causes TS. Since Augie’s diagnosis, two more children at his school have been diagnosed, bringing the total to three confirmed cases of Tourette Syndrome at Frankfort Elementary.

I personally feel the clock ticking for a cure. We’re fortunate that, so far, his symptoms have been mild, but I’ve heard more than one parent say, “My child’s symptoms were the worst at age 11.” My son just turned 10. Symptoms traditionally escalate in adolescence. Changes happen overnight. Augie could wake up tomorrow and not have control, and there is no greater motivator than fear. We have just returned from another trip to Green Bay to attend our second TS Awareness walk. As of today, Team Pasche has raised over $1,200 for TS research.

Augie is really looking forward to going back to Green Bay. As he said, “These kids are just like me, you know? Packers fans.”

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