If you search “Tourettes” on Twitter, you’ll come up with a slew of tweets that joke about Tourettes. Usually, they’re something to the effect of “Someone spilled coffee on me, and now I have a bad case of Tourettes #swearingbigtime #hotcoffee.” These misunderstandings don’t bother me as much as they used to (I think ignorance is to blame, not a purposeful insult.), but they can sure make it difficult for parents who are trying to find answers for the strange symptoms their children have suddenly developed.
“My child has started repeating words. Could he have Tourettes?”
“My child has been on every allergy medicine known to man. Why is he still clearing his throat?”
“Why is my child grimacing all of a sudden?”
“My child can’t have Tourettes, can she? She’s not swearing at people.”
Unfortunately, Tourettes isn’t always easy to identify, especially if you don’t know what you’re looking for. It looks different on every individual who has it, and it shows up at different ages in different children. There isn’t a test you can take to determine whether a child has Tourettes or not (at least, not yet), and your regular pediatrician can’t diagnose it. It’s one of those things that can often go undetected for years if the symptoms are credited to some other ailment. Often, symptoms can be masked by other disorders, such as ADHD or OCD.
Just because it can be confusing in the beginning, however, doesn’t mean there isn’t hope. Tourettes is not only a disorder that can be identified better and better as the we make medical progress, there are also many ways to manage it that we didn’t have even twenty years ago. I’m not a doctor, and I can’t diagnose anyone, but I can give you a list of symptoms that can be helpful in starting the process of discovering whether your child has Tourette Syndrome or not.
Where to Begin
Your pediatrician is your first stop along the way. He’ll be the one to write you a referral if he thinks your child might indeed have the disorder. Before he can make the referral, he’ll need to know not only the symptoms, but how long they’ve been going on. Here’s a list of common first tics that a child often displays when the Tourettes is beginning to manifest.
What is a tic? An involuntary motor or vocal movement or sound. These can be simple (involving very few muscle groups, such as a blink or grunt) or complex (involving multiple muscle groups, such as clapping or saying an actual word). Tics are the defining symptom of Tourettes. These tics are what characterize the disorder, and can be very visible or sometimes nearly completely invisible. This table is comprised of common tics gathered from multiple authorities, such as Mayo Clinic, TouretteSyndrome.net, the NIHS, and TSA-USA.
Something easy to do would be to print this list and highlight the ones your child displays, then write the other tics he or she comes up with on the back. Make sure to record to your best ability the dates the tics started (or that you noticed them with regularity). If you go to your doctor and simply say, “I think my child has Tourettes,” he’s going to have a lot of work to do, and may be less likely to refer you to a specialist than if you hand him a list of symptoms that are easily identifiable and dated. This gives him a better picture of what your child is going through.
A note of caution: Many, many people think that swearing the the trademark tic of Tourettes. Coprolalia, or the version of Tourettes that involves constant, uncontrollable swearing, is a highly unusual version of the disorder. The New Jersey Center for Tourette Syndrome estimates that only 10% of people with Tourettes have Coprolalia. I’ve heard it estimated by other authorities to be as low as 5% and as high as 15%. Either way, it’s not a very high number, so don’t be too quick to disqualify the disorder if your child is displaying many other symptoms, but not swearing.
The Next Stop
Once you’ve seen your pediatrician and you have a referral to a specialist, such as a child neurologist (the kind I saw), he’ll have even more questions. It will be helpful to continue making your list between visits, complete with dates, to give to him. This is, after all, the guy who makes the diagnosis.
You might be asking, how does he make a diagnosis? Is there a DNA test or some other test that can answer our questions? Unfortunately, no. Tourettes must be documented by a licensed professional for at least a year, with at least two motor tics and one vocal tic, to receive an official diagnosis on paper, according to the CDC’s report on the DSM-V (the book to rule all books on diagnosis like Tourettes). The symptoms must also have begun before the age of 18, lasted a full year at least, and not be due to any medication.
This is where it can get frustrating. You won’t be able to get a diagnosis on that first visit. As I stated earlier, the professional must document the symptoms for a year. Don’t give up hope. There are ways you can help your child manage his or her tics even without a diagnosis. Regular exercise, a healthy diet, and monitoring your child’s anxiety are all great places to start. My parents made sure I was reminded again and again of God’s love every night before I went to bed (the time of day that makes me most anxious).
What If There’s No Clear Diagnosis?
Unfortunately, Tourettes shares quite a few symptoms with other disorders. In fact, what may begin as a set of tics might actually be indicative of another disorder that takes precedent. Many children with ADHD, OCD, and Autism often have tics without having full-fledged Tourette Syndrome. Comorbidity is common, where many children with one disorder have symptoms or pieces of other disorders as well. Many have tic disorders instead. A tic disorder is a more mild version of Tourettes.
This strange cross-over between disorders is the reason documenting your child’s behaviors and displayed symptoms is one of the best ways to help prepare for a visit with a professional. Specific, dated information is what will help doctors make informed decisions.
Remember, a Diagnosis Isn’t the End
If your child does receive a diagnosis of Tourette Syndrome, it’s not the end of the world. It’s important to remember that some cases are quite mild (like mine), where most people can’t even tell the individual has the disorder. There are, of course, some cases that are quite severe. These are the ones that make the news. It’s important to take a breath and remember that no matter what the prognosis is, your child is still your child. She’s the same beautiful, amazing, intricate piece of art that God weaved with His own hands, and no less the person she was before.
Your treatment will differ from all other treatment or management plans because your child is an individual with a mind like no other. For severe cases, they are working on very sophisticated brain technology to help individuals gain better control over themselves. Some people might work with therapy, such as Cognitive Behavioral Therapy. Others turn to medicication. What you choose is between you, your child, and his doctor.
One final bit of encouragement is that most cases of Tourettes and tic disorders improve as children grow up. Some disorders even seem to disappear. NHS of the UK says, “In around two-thirds of cases of Tourette’s syndrome, symptoms improve significantly (usually around 10 years after they started).” They go on to say that about a third of people who continue to experience tics throughout their lives seem to see their tics become milder as they age. Of course, there are some people, such as myself, who see the tics either stay the same or even worsen a bit. For us, the good news is that those children are in an age of great medical growth, and I believe treatments will continue to improve with each passing year.
What about you? Do you have a story or experience you’d like to share? Please post all questions and comments in the Comment Box below. You can also email me, as I love to get to know my readers. For more free information about these blogs post topics, as well as reminders of my writing updates, just sign up for my newsletter. As always, thanks for reading!