I remember a mom sitting in my office, her voice trembling a little. “He just started… blinking. A lot. And then this little throat-clearing sound. Over and over. The teacher noticed it too.” She was worried, confused, and like any parent, just wanted to understand what was happening with her little boy. Sometimes, these concerns lead us to a conversation about something called Tourette Syndrome.
It sounds a bit intimidating, I know. But let’s break it down.
So, What Is Tourette Syndrome, Really?
Tourette Syndrome (TS) is a condition that affects the brain and nerves. The main thing you’ll notice are “tics.” Now, tics are sudden, quick movements or sounds that your child can’t control. They’re involuntary – it’s not something they’re doing on purpose, even if it sometimes seems that way.
We usually see two kinds of tics:
- Motor tics: These are body movements. Think of things like shoulder shrugging, eye blinking, or even arm jerking.
- Vocal tics: These involve sounds. It could be throat clearing, sniffing, or grunting.
Often, motor tics show up before the vocal ones. Tourette Syndrome usually starts in early childhood, and here’s some good news: for many, it tends to get better as they head into adulthood. TS is considered the most complete form of what we call tic disorders.
You might wonder how common this is. Well, about 1 in 100 children might have some kind of tic disorder. Tourette Syndrome itself is a bit less common, affecting roughly 1 out of every 160 children.
And just to be clear, Tourette’s isn’t the only tic disorder out there. We look at the specific symptoms to figure out what’s going on:
- Provisional tic disorder: This is when there are motor tics, vocal tics, or both, but they’ve been around for less than a year.
- Persistent (chronic) tic disorder: Here, it’s either motor tics or vocal tics (but not both together) for more than a year.
- Tourette Syndrome: This is diagnosed when a child has both motor tics and vocal tics, and they’ve been present for over a year.
Spotting the Signs: What Tics Look Like
Tics are the main sign of Tourette’s. They often start popping up between ages 5 and 7, and can sometimes be most noticeable around age 12.
Tics can be simple or more complex:
- Simple tics are quick, brief, and involve just a few muscle groups. That shoulder shrug or sniff I mentioned? Those are good examples.
- Complex tics involve more muscle groups or a series of movements. Jumping could be a complex motor tic. Repeating certain words or phrases (sometimes called palilalia if it’s their own words, or echolalia if it’s others’ words) is a complex vocal tic.
Here are a few more examples to give you a clearer picture:
Motor Tics Might Include:
- Arm jerking
- Bending at the waist
- Eye blinking (often one of the first things parents notice)
- Head jerking or twisting
- Hopping
- Jaw movements
- Making faces (like a grimace or twitch)
Vocal Tics Might Include:
- Barking or yelping sounds
- Grunting
- Shouting out
- Sniffing
- Throat clearing (another very common one)
Can Tics Be Concerning?
Most tics are not physically harmful, though they can be tiring or cause a bit of muscle soreness. However, some tics can be more worrying. For example, a motor tic might involve hitting themselves.
There’s also a specific, and often very misunderstood, vocal tic called coprolalia. This is when someone uncontrollably says swear words or socially inappropriate phrases. It’s rare – not everyone with Tourette’s has it – but it can be incredibly distressing for the child and for everyone around them. It’s so important to remember this isn’t intentional misbehavior. It’s the Tourette’s. Kids with coprolalia can face unfair reactions at school or home, and that’s something we really want to avoid.
What’s Behind Tourette Syndrome?
The honest answer? We don’t know the exact cause of Tourette Syndrome. It often runs in families, so we’re pretty sure genes play a significant part. If a parent has TS, there’s a higher chance their child might develop it, though it’s not a guarantee.
There’s also thinking that it might involve how the brain handles certain chemicals called neurotransmitters. These are like messengers in the brain. Dopamine is one such chemical, and it’s involved in regulating behavior and movement. An imbalance here might contribute to TS.
Are Some Children More at Risk?
We do notice a few things that might make Tourette Syndrome more likely:
- Sex: We tend to see TS more in boys than in girls – about three to four times more often.
- Family history: As I mentioned, having a family member with TS is a risk factor.
- Prenatal health: Some studies suggest that if a mother smoked during pregnancy or had certain health issues, the risk for TS in the child might be a bit higher. Being born with a very low birth weight could also be a factor. But these are just associations, not definite causes.
How We Figure Out If It’s Tourette Syndrome
There isn’t a single blood test or brain scan that can say, “Yes, this is Tourette’s.” Instead, we doctors, often with the help of a neurologist (a brain specialist), look very carefully at your child’s history and symptoms.
For us to consider a tic disorder, the tics usually need to have started before your child is 18. To diagnose Tourette Syndrome specifically, we look for:
- Both motor tics and at least one vocal tic (though not necessarily at the same time).
- Tics happening many times a day, nearly every day, or on and off, for more than a year.
- The tics started before age 18.
- The tics aren’t caused by medications, other substances, or another medical condition.
I’ll likely ask you lots of questions, like:
- “When did you first notice the tics?”
- “How often do they seem to happen?”
- “Can you describe them for me? Are they simple little movements or more involved?”
Sometimes, we might do tests, but those are usually to rule out other things that could be causing tics, just to be thorough.
Does Tourette’s Come with Other Challenges?
Yes, quite often. Many children and adults with Tourette Syndrome also deal with other conditions. It’s like they travel together. These can include:
- Attention-Deficit/Hyperactivity Disorder (ADHD): This is very common.
- Obsessive-Compulsive Disorder (OCD): Repetitive thoughts and behaviors.
- Anxiety disorders
- Learning disabilities
- Autism Spectrum Disorder (ASD)
- Depression
- Sometimes, challenges with impulse control or anger, like Oppositional Defiant Disorder (ODD).
It’s important we look at the whole picture, not just the tics.
Managing and Living with Tourette Syndrome
If the tics are mild and don’t really get in the way of daily life, school, or friendships, we might not need to do any specific treatment for the tics themselves. But if they’re more severe, causing distress, interfering with schoolwork, social life, or even causing self-injury, then we definitely look at ways to help.
Can Medication Help?
Sometimes, yes. For more troublesome tics, we might consider medications called neuroleptics. These drugs can help by adjusting the levels of dopamine in the brain, which can, in turn, reduce tics. There are also medications to help with those co-occurring conditions, like ADHD or OCD, which can make a big difference overall. We always weigh the benefits and potential side effects carefully.
What About Behavioral Therapy?
This is a really hopeful area. Remember, the tics are involuntary. Your child can’t just “stop” them. But, there are therapies that can help manage tics and lessen their impact.
One very effective approach is called Comprehensive Behavioral Intervention for Tics (CBIT). It’s not about suppressing tics through sheer will, but rather teaching skills to:
- Become more aware of tics: Sometimes, there’s a feeling or sensation, a premonitory urge, just before a tic happens. Learning to recognize this urge is the first step.
- Learn a “competing response”: Once that urge is felt, the child learns to do a different, less noticeable behavior that makes it harder for the tic to come out. For example, if the tic is a shoulder shrug, the competing response might be to gently tense the shoulder muscles downwards.
- Make lifestyle changes: We also look at things that might make tics worse, like stress or excitement, and find ways to manage those situations. Staying calm and avoiding super stressful triggers can sometimes reduce how often tics happen.
What’s the Outlook?
There isn’t a “cure” for Tourette Syndrome, but the outlook is generally positive. For many, tics lessen significantly, or even go away, as they move into their late teens and early adulthood. Even if some tics remain, most adults find they don’t need ongoing medication or therapy. People with Tourette Syndrome live full, normal lifespans.
Can We Prevent Tourette Syndrome?
Unfortunately, no, we can’t prevent Tourette Syndrome because we don’t know the exact cause. However, getting an early diagnosis and starting supportive strategies can make a big difference in preventing tics from becoming more severe or impacting your child’s life more than they need to. Early understanding and support are key.
Living Day-to-Day with Tourette Syndrome
It can be a journey, especially for children. School, friendships, just feeling “normal” – these can all have extra hurdles. That’s why a strong, understanding support system is so vital. Friends who get it, family who are patient, and teachers who are informed can make all the difference.
For children with Tourette’s, some simple things can help at school:
- Perhaps smaller class sizes if big ones are overwhelming.
- Some personalized attention or understanding from the teacher.
- Maybe a bit more time to finish tests or assignments if tics are particularly distracting.
Open communication with the school is so important.
Take-Home Message: Key Things to Remember About Tourette Syndrome
It’s a lot to take in, I know. If you’re a parent navigating this, here are the main things I’d want you to hold onto:
- Tourette Syndrome causes involuntary tics – sudden movements or sounds your child can’t control.
- It often starts in childhood and frequently improves with age.
- Diagnosis is based on symptoms and history, not a specific test.
- It often comes with other conditions like ADHD or OCD.
- Treatment isn’t always needed for mild tics, but options like behavioral therapy (CBIT) and sometimes medication can help manage more impactful tics.
- Your child is not doing this on purpose. Understanding and support are crucial.
- Many people with Tourette Syndrome lead successful and fulfilling lives.
When to Reach Out for Help
Of course, if you’re worried about any tics your child is showing, please come and talk to us. That’s what we’re here for.
And definitely reach out to a healthcare provider right away if someone with Tourette Syndrome:
- Becomes violent or aggressive.
- Is injuring themselves with their tics or in other ways.
- Talks about suicide or wanting to harm themselves. (In the US, you can always call or text the 988 Suicide & Crisis Lifeline. For any immediate emergency, call 911.)
You’re not alone in this. We’ll figure out the best path forward for your child and your family, together.