Q : My son just started ticcing. Does that mean he will develop Tourette syndrome?
Short answer: No. At least 20% of all children have tics for some period of time, but only about 2-3% of all kids have tics for more than a year. Then again, every child with Tourette syndrome started having tics at some point. The truth is, there is very little hard information about what happens over time to children with a recent onset of tics. That is one reason we are so eager to complete our New Tics study! You are warmly invited to discuss participation with us; our contact information is on the study web page.
Long answer: See this academic review article by Black and colleagues (2016).
Q: How do I know if what my child just did is a tic, or if s/he is just being annoying?
This comes up a lot. Here are a few thoughts. First, you have to know what typical tics look like. On this page is a link to a video whose first 5 minutes discuss tics and show lots of examples. Some information to help doctors distinguish tics from other repeated, stereotyped movements appears in this slide show.
Typical tics are not done to annoy anyone. Usually they annoy the person with tics more than anyone else. You’ll get better at recognizing typical tics as you learn more about tic disorders. Since tics are more common under stressful situations, and can usually be suppressed for a brief period of time, with effort, people who are naive to tics can make erroneous judgments like, “it must be on purpose–he didn’t do it when he was watching his iPad, just when I came in and yelled at him.” But that’s incorrect, and punishing someone for tics is not helpful.
There are some actions that are just hard to be sure about. For instance, knuckle cracking is common in people with tics, but it’s pretty common in lots of kids without tics, too. Or, sometimes a repeated action is clearly a compulsion and not a tic, and sometimes it’s clearly a tic and not a compulsion, but the definitions overlap and sometimes you just can’t be sure. An example would be touching things until it feels “just right.”
Of course it’s natural to wonder “why did he do that just then?”, but lots of times that is just not the key question. I find it is much more useful to ask whether a particular behavior is something we can do something about. If it’s a typical tic, yes, we can work on it. But sometimes if it’s not we can work on it, too. So ask your doctor instead whether it’s something s/he knows how to treat.
Q: What treatments are available for a child who just started to have tics?
The first question is whether s/he needs treatment. Most children probably don’t. All of our current treatments just reduce the symptoms. A key question is, are the tics really interfering (now) with schoolwork or friendship? If so, then that’s a good time to discuss treatment options with your doctor.
At the present time, experts generally agree that treatment for PTD [Provisional Tic Disorder] is warranted only when symptoms are severe and persistent enough to substantially distress the child or interfere with his or her school experience or social development.
For children who need treatment, there are many options. An important question in selecting a treatment is whether tics are the biggest problem, or whether ADHD or OCD or other symptoms are bigger problems. Treatments include medications of various types, or focused behavior therapy.
Even without treatment, tics fluctuate in severity over time. Many people with tics have “bad days” or good weeks, etc. Besides, both patients and doctors tend to be hopeful, and think that whatever they try is working. For these and other reasons, randomized, placebo-controlled studies are very important to know whether a new treatment really works. Fortunately, such studies have been done for many medication and behavioral therapies.
Q: How can I enroll in your New Tics study?
Q: Where can I find a doctor who treats tic disorders?
Most doctors who specialize in tic disorders are psychiatrists or neurologists, though other specialists are also involved, like developmental pediatricians or psychologists. A more important question is whether the doctor has a lot of experience with tic patients. The Tourette Association of America has a doctor-finding web tool, or often it helps to just talk with someone from the local TAA chapter and ask them for their referral list.
Q: What should I tell the teacher or the school? Does my child need an IEP?
The answers will be individual to your child’s situation and your family’s preferences. But the Education Advisory Board of the Tourette Association of America has published some information for educators, and those are good resources to start with.