The bell rang for recess, and I heard my name called. My teacher wanted to talk to me. I gathered all my courage and got up from my desk. Leaving my tearstained math book behind, I approached her.

“Noa, please tell me what’s wrong.” I could hear the concern in her voice and see the pain in her eyes.

But I just couldn’t speak. What could I possibly say that would make her understand me if I didn’t understand what was happening myself?

“I’m fine. I just want to sit at my desk and color.”

To this day I regret not telling her because maybe she could have helped. But I was scared — I didn’t want her to think I was crazy! I was worried the school would kick me out if they found out I was nuts. I wish I had known better, but I was only 11.

Answers at Last

I never really understood what was wrong with me until I was 13. In seventh grade, I bravely made an appointment with my doctor. Having had a rocky history with doctors, I never thought I’d be choosing to go. I sat down with him, and for the first time, I had a real conversation about my issues.

“I’m done with the stares,” I told him. “Done with the questions. Done with the nasty medicine. Done with everything. I just want to be a normal kid. When will this end? I feel trapped in my own body. When can I be set free?”

“What you have is called PANDAS,” he explained. “It’s a strep disease that goes into the blood when not taken care of right away.”

I was exhilarated. That means I’m not crazy! There’s a valid reason for why I’m doing this!

“Noa, I also have PANDAS. Have you noticed I have tics, too?”

Ugh. Now I know I’m going to look ridiculous for the rest of my life.

Reading my thoughts, he continued. “But don’t worry — this won’t follow you into old age like it did with me. We caught yours early. It will go away. It’s not forever.”

I did more research, read some articles about PANDAS and tics. What they were describing sounded just like me, and suddenly everything made sense.

I learned that tics can improve or resolve completely with age, and that’s what happened to me. By eighth grade, my tics were gone.

Instead of emotionally processing everything I had been through, I wanted to run away from it all. I didn’t want to talk about it or even think about it. I just wanted to close that chapter of my life forever.

In high school, I would occasionally run into people from middle school and each time, I’d feel a pang of anxiety. I didn’t want to be labeled as “that girl.”

Rising Above

Years passed and still I kept that chapter of my life closed. But then I came across a documentary film about the true story of a man who had tics and became a successful teacher.

The man in the film was only an actor, but even so, I saw myself in him. He appeared strange to others, just like I did. He was being denied jobs and opportunities, but he rose above his challenges — maybe I could too? The film cracked open a door to my past, to memories and feelings I had run from. Now I was faced with a mirror image of myself. What did this mean for me?

After the movie, I called my mom and I let out everything I was feeling, all the pain of seeing “myself” on screen.

“Noa,” she said, “It’s over. You’re not that girl anymore. That was seven years ago. It’s over.”

It took me a moment to swallow what she was saying. She’s right! I’m still stuck in the past but I’m not that girl anymore; I can move on.

Speaking with my mom helped me to process the movie in a new light. I was incredibly inspired by how the main character owned his issue. He was so open about his disability, and he didn’t let it get in the way of anything. I realized that I don’t need to keep living in fear of “someone finding out.” I could even use my experiences to help people.

I’m grateful I no longer have tics, but looking back, I can see how much I’ve grown from the struggle. It helped me develop into a more sensitive, caring person. It taught me that we really don’t know what other people are going through. We need to be kind — always.

I learned how important it is to explain things to children in a way they can understand, and I hope to be able to do this for my own kids one day. Whenever they have questions or need anything, I want them to feel comfortable coming to me.

Suffering makes you different. When you know how it feels, you can empathize with others going through the same thing. I want people with tics to know they’re not alone, and this wish is what gave me the strength to share my story.

A Teacher’s Guide to Tics

Understanding Tics

Tics, by nature, are inconsistent. They may be quieter in one specific class and louder in another.

Tics usually increase when a student is emotionally stressed, and dissipate when the student is engrossed in an enjoyable activity.

Physical stress to the body — such as hunger before lunch or fatigue in the afternoon — can trigger or worsen tics.

Even when tics seem to be expressed purposefully in reaction to a situation, they are neurological responses. (This is especially important to remember when it comes to insulting or vulgar verbal tics.)

Reminding the student not to tic may be counterproductive. The added stress to control it can increase anxiety, exacerbating the urge.

The mental concentration and energy to suppress the urge of tics can affect academic performance.

Suggested Classroom Strategies

Ignore tics when possible. Many noises during a school day could be considered distracting: coughs, sneezes, overhead airplanes, people in the hall, and more. They aren’t distracting because we recognize them, and they become unnoticeable background noise. We should approach tics the same way. Also, when teachers model “planned ignorance” of tics, it helps reduce bullying by peers.

Don’t encourage a child to leave when tics appear. For some students, this can be a helpful accommodation, but for many, it may result in the student perceiving tics as “bad” rather than feeling accepted for their disability.

Educate the class and school staff. Tics become less disruptive when everyone knows that they’re going to occur and why they occur. The students learn compassion, recognizing that everyone has unique attributes and difficulties.

Information adapted from tourette.org

Q & A with Dr. Peggy Lazerow

Dr. Peggy Lazerow is the division chief of pediatric neurology at Sinai Hospital in Baltimore, where she sees a myriad of neurologic conditions including tics, headaches, and seizures.

What are “tics”?

Tics are involuntary movements or vocal noises that come and go. There are many categories of tics including simple, complex, motor, and vocal. When an individual presents with both motor and vocal tics for over a year, they may be diagnosed with Tourette Syndrome.

How are tics diagnosed?

A clinical diagnosis can be made after getting a detailed medical history and performing a thorough physical/neurological examination. I don’t routinely order labs, imaging studies, or diagnostic tests to make this diagnosis.

What kind of treatments are available and suggested for tics?

There isn’t usually a “quick fix” for tics. Rather, there are a myriad of treatments, and patients often require a comprehensive multidisciplinary approach. If tics are functionally affecting a child in a major way, and the child and his family want to move forward with treatment, I recommend one and/or both of the following: medication and Comprehensive Behavioral Intervention for Tics (CBIT), where a child works directly with a therapist to help with tic symptoms.

There are a few tiers of medication. I usually start with clonidine or guanfacine at the lowest dose possible. If side effects are tolerable and there is still room for improvement in symptoms, I will increase the dose. It’s always a balancing act between the benefits of a medication and the side effect profile.

If one of these medications doesn’t work well, I try the other. If neither helps, then I’ll move to the next tier of tic medication with more significant side effects (such as Risperdal or Haloperidol). It’s always important to also treat comorbidities that may exacerbate tics, such as anxiety or obsessive compulsive disorder (OCD).

Do tics often last into adulthood?

Sometimes. Tics tend to follow the “rule of thirds” —  one-third get better, one-third  stay the same, and  one-third resolve completely. It’s also very common for tics to morph from one type to another. For example, someone may exhibit eye blinking for a few months, only to be replaced by a throat-clearing tic.

What’s the difference between tics that go away on their own and those that don’t?

The etiology of all tics is similar and quite complex. All tics will wax and wane in severity and intensity depending on the patient, his/her comorbidities, and the clinical scenario. Approximately one-third of tics will resolve spontaneously, but this is difficult to predict.

What is the relationship between tics and PANDAS?

This is a controversial topic that has divided the pediatric neurology community. You’ll find all kinds of opinions that run the gamut from doubting the existence of PANDAS altogether to treating the condition with chemotherapy.

There’s a belief that infection with strep can cause tics and strange changes in behavior. The problem is that some of the guidelines for PANDAS are only followed loosely or not at all. There are kids who are strep carriers and will always test positive for strep; that does not imply a causation, necessarily. Furthermore, a lot of the lab values we use to determine if someone fits the criteria for PANDAS are not studied well in children and the norms exist only in adults.

In my view, when you use loose guidelines to make a diagnosis, it ultimately leads to potentially dangerous treatment, such as prolonged antibiotic use, chemotherapy, intravenous immunoglobulins, or plasmapheresis. Because the nature of tics is that they wax and wane, sometimes we falsely attribute small improvements to these harmful therapies and then we’re stuck — every time a kid acts out or twitches, we think it’s time to give them more chemotherapy. The very real connection between psychiatric comorbidities and tics is often ignored because there is a stigma against psychiatric illness and they are harder to treat — instead of a quick pill or injection, long-term therapy may be required.

Is there a relationship between tics and anxiety?

I do believe there is a strong relationship between the two. Some research suggests this, although it’s still under investigation. Some other common behavioral comorbidities include OCD and ADHD.

“Just Ignore It”

A Parent’s Story

Our eight-year-old son Moishy came home from school one day, repeatedly making a snorting sound. It was grating to everyone in earshot, so I asked him to stop. But he couldn’t. It was involuntary and we heard “snort” “snort” “snort” all evening until he went to sleep.

My husband and I spent that night anguishing over Moishy’s newly developed tic. My son has ADHD and is already challenged socially. Should we send him to school tomorrow? Would he ever get over this? How will he ever have friends? Get married? It seemed like our lives were crashing down.

The next morning, he was still snorting, so we decided to keep him home. We made an emergency appointment with his pediatrician and came into the office with grave looks on our faces.

“What’s wrong?” the doctor asked.

We slowly got the words out. “We think Moishy has… tics.”

“Oh, that’s all?”

She explained that in most cases, you ignore a tic — completely — until it goes away. It will usually disappear on its own. And even if it comes back, keep ignoring it. Bringing any attention to it can make it last longer. “Definitely don’t keep him home from school. He’ll be fine,” she reassured us. “And he’ll eventually outgrow it.”

We were still nervous, so we consulted with a pediatric neurologist and an educational expert. Both echoed her opinion.

By the end of his “day off” at home, his tic had morphed from snorting to blinking. The following day, he seemed to be sticking his tongue out involuntarily, but thankfully, it was barely noticeable. The next day, his tics had all but disappeared. He hasn’t had another tic episode since, but now we know what to do if he does.

(Originally featured in Family First, Issue 800)