Tourette,s Syndrome FAQ

The short answer is that people with Tourette's Syndrome (TS) have tics (see What is a tic?).

A lot of people have tics, like sniffing, grunting, or licking lips. Sometimes, a person has tics for long enough that a doctor says that person has Tourette's Syndrome.

People with TS have had at least one motor (movement) and one vocal (sound or word) tic. They have had these tics for over a year with no more than three months tic free.

Tourette’s Syndrome is genetic. That means that a parent, uncle, aunt or someone else in the family probably has/had tics.

We use the term "unvoluntary" because often a person with TS feels an urge to tic. A person with TS can sometimes suppress the tic for a while but will eventually have to tic. (see "Can I stop ticcing if someone asks me to?").

Some people describe the urge as being like an itch. You may be able to ignore it for a while but sooner or later you are going to have to scratch it.

Other times you may not even realize you've ticced until after you've done it. You may be sitting there, hear a sound and think, "That was me?"

Sometimes a new tic will start because of something that you did for a reason but then couldn't stop doing. For example, one kid with TS got a cold and started sniffing. Then after the cold was completely gone, he kept sniffing because the sniffing had turned into a tic.

This list contains several examples of some motor and vocal tics. This list gives examples but is not meant to contain every possible tic. That list would be very very long. Just because a tic is on the list does NOT mean you will have that tic someday. In fact, you will not have most of the tics on the list.

Motor	Vocal
Eye blinking	Clearing throat
Facial grimace	Coughing
Shoulder shrugging	Humming
Smelling	Whistling
Touching	Repeating your own words (palilalia)
Jumping	Repeating other's words (echolalia)
Biting self, others, or things	Screaming
Touching chin	Shouting
Clicking teeth	Repeating phrases or words
Abdominal jerking, abdominal tensing	Yelping
Banging things	Talking to oneself
Chewing on self, others or things	Snorting
Head movements (jerking, tossing hair, etc)	Coprolalia - speaking obscenities or socially taboo or inappropriate phrases
Licking lips, licking others or self	Grunting
Opening mouth	Gasping
Tearing things	Making animal noises
Stretching neck	Moaning
Cracking (fingers, jaw, neck)	Talking in an accent
Kicking	Changing pitch or volume of voice
Hitting	Belching

TS can be a hard thing to explain to people. This is an analogy that Haejinn, one special adult with TS, uses to explain Tourette's to kids:

First, let’s talk about the brain. We all know that our brains are kept in our heads. Did you also know that the brain is kind of the BOSS of your whole body? The brain has to keep track of what every other part is doing and then try to fix it if a part isn’t doing what it’s supposed to do. If you want your hand to move over and pick up a glass of juice, it’s your brain that is in control of every movement that is needed to get that juice into your hand. But your brain is also responsible for things you don’t even pay attention to. Did you know that when you’re reaching for that glass of juice, your brain is also talking to the muscles in your legs and waist, making them move ‘just right’ so that when you do reach out for the glass, you don’t fall over? I’ll bet you didn’t even think of that!

So, I’ll bet if you try to think of all the things the brain has to pay attention to, you can imagine that it is very, very busy! Since the brain is so busy, it has helpers. You can think of these helpers as little messengers. The messengers carry the brain’s message to the right part of the body. For example, if the brain decides it’s time for the toes to wiggle, it tells a messenger “Hey, go tell those toes to start wiggling!”.

Sometimes people are born with TOO MANY messengers. After all the messengers have been assigned their job, there's a bunch of these messengers left over. They want to help too, but the brain says 'No, I've already got enough helpers. Go sit yourselves in the corner over there and occupy yourselves and stay out of our way."

Well, of course, the extra-messengers soon get bored and angry and decide they're going to help whether the brain likes it or not. So THEY start telling different parts of the body to do stuff. Now, these parts don't know there are extra messengers. They just know that when they're told to do something, they do it EVEN IF THE OWNER OF THE BODY DOESN'T WANT THAT PART TO DO IT.

If you don’t believe me, try to not blink as long as possible. Pretty soon the brain will decide it's time to blink and send down a messenger. The poor eye will be confused.

"Here's the kid I belong to telling me not to blink, but at the same time, here's one of the brain's messengers telling me that I HAVE TO blink. Well, I better listen to the messenger before the brain gets mad at me!"

So then, of course, your eye will blink because it thinks it’s doing what the brain tells it to do.

There’s a lot of silly things these extra messengers make me do. Sometimes they want me to stamp my feet. Sometimes they want me to growl. (I like that one, it’s kind of fun!). Sometimes they make me shake my head. And lots more!

This is called coprolalia. It is rare. Only a small number of people with TS have coprolalia. People with coprolalia don't mean to hurt anyone's feelings and don't get to pick the words that they say.

Most people with TS have their highest number of tics between 8-12 years old and start having fewer tics when they are a teenager.

Some people with TS, but not all, can stop their tics for a short period of time but eventually the tics will have to come out. That does not mean that you should try and hold your tics in. It can be very tiring to try and hold in your tics. Some kids hold their tics in during class (or other quiet time like church, the library, etc.) and then have a burst of tics at lunch, recess, or when they get home.

Some people describe it as being like an itch. You keep trying not to scratch but it itches so much. Pretty soon, you can't pay attention to anything except the itch. Finally, you get so tired from trying not to scratch that you can't take it anymore. Then you scratch like crazy, for a long time, until you think it feels better and you end up scratching way more and way faster than if you'd just scratched it when it first started itching.

This is called waxing and waning. Waxing is when you are having more tics and waning is when you are having less tics. No one completely understands exactly why this happens. Some kids tic more when they are nervous or tired, some kids tic more when they are sick, some kids tic more when they are watching TV or playing video games, and some kids tic more when they are relaxed. Just like no two people are the same, no two people with TS are the same.

That is one of the mysteries of Tourette's. You may be coughing and head jerking one month then it changes to lip licking and humming the next. You just never know. Some people have one tic that is pretty much always there and others that change. Some people have one or two tics at a time and some have more. TS is different for everyone.

There is not a cure for TS. In some cases, tics can be decreased with the use of medication. However, there can be side effects. This means that there are things that the medicine does to you besides help the thing you're trying to fix. Sometimes, medications for ticcing can make you sleepy, grouchy, or make it harder for you to pay attention in class. Any use of medication should be talked about with a parent and doctor first.

Unfortunately, some kids are just mean. It is not your fault you are being teased. Kids who tease others could find a reason to tease anybody (like someone's glasses, braces, the way they look, or where they live). Check out some of the bullying websites listed in our links section. There, you can find strategies to help you.

It is named after Dr. Georges Gilles de la Tourette, a French doctor (today he would be called a neurologist). The first reported case of Tourette syndrome was made in 1825 by Dr. Itard, another French doctor. In 1885, Dr. Gilles de la Tourette described nine patients with the syndrome of multiple motor and vocal tics. It is named after him because he was the first to describe these patients as having a movement disorder.

It is best not to point out tics to your friend. If your friend feels that you are looking at the tics all the time, it might make your friend nervous. Being nervous sometimes makes people with Tourette's tic more.

Sometimes, kids with TS will joke about their tics with you. That is okay but it is best to let your friend make the jokes. You don't want to accidentally hurt your friend's feelings.

Locations of hidden items in the "game room"- 1)click and hold the mouse button over the girl's CD player to see her disc drop out 2)click and hold the hole in the pool table to see a mouse pop out 3)click and hold the right side desk drawer to see paper clips jump out 4)click and hold the middle of the pool table to see an eight ball appear 5)click and hold the boy's left side to see music playing 6)click and hold the area between the wall and the computer to see a spider crawl up the wall 7)click and hold the top of the pool cue to see the cue light up. Depending on connection speed- times to see images may vary.

Disclaimer- I am "just a mom". Every effort was made to insure this information was as accurate as possible. However, no information found on any website should be substituted for the care of a licensed competent professional.

A WORD ABOUT SPELLING
The official name of the condition, according to the DSM-IV-TR, is Tourette's disorder.
Tourette's is also referred to as TS, Tourette Syndrome, Tourette's syndrome, GTS, and Gilles de la Tourette's Syndrome.
You may also see it referred to as the Tourette Syndrome Spectrum Disorder,
but many proponents of this terminology include conditions in this alleged spectrum
which have not been shown to be part of or genetically linked to Tourette's syndrome.
Common misspellings are tourettes syndrome, tourretts, tourrettes, touretts, terrets, terets, turettes, and turrets syndrom.
Tourette's disease is another common misnomer (it's not a disease).
Another common misspelling is ticks: ticks are nasty beasts that bite dogs and people. People with Tourette's disorder have tics.

Thank you to TSNW for permission to use the copywrited wording above and for her countless hours of dedication to Tourette's education.
Thank you to Haejinn for permission to print her story on how to tell kids about TS (found on the FAQ page).
Thank you to Haejinn, SLeaska, HBool, Glen625,Sabina0815, MaterialDiva, BlueChin and KBurra for their support and help getting this website up and running. It was truly a collaborative effort.
Thank you to Teri and Leah for their input and support. Not only have you helped with this website but you have also supported us through this journey. Words cannot thank you enough!
A huge THANK YOU to our son for not only helping with this site but for teaching me more about life, humility, and humanity than anyone else I know.

Copyright 2006. All right reserved.
No part of this publication may be copied, re-printed, or used in any form without my prior written consent.
By Cristimo3: Growing Up With Tourette's Syndrome- Information for Kids