Make your own free website on Tripod.com

Tics and Tourette's

by Jim Chandler, MD, FRCPC

Part 1

Introduction

What are Tics?

Types of tics

Motor tics

Vocal Tics

Complex tics

Tic related phenomena

Part 2

Types of tic disorders

Course

Comorbidity

How common are tic disorders?

Diagnosing Tic Disorders

Causes of Tics

What can be done about tics?

Strategy #1 Reducing the severity of the tics.

Non-medical interventions

Medications

Strategy #2 Working on changing the person and the environment so that the tics are not such a big deal.


 

Part 1.

Tics and Tourette's by Jim Chandler, MD, FRCPC

Introduction

This pamphlet is directed to parents and caregivers of children and adolescents who have a tic disorder, including Tourette's. It is geared towards children who have tics along with other neuropsychiatric disorders such as learning disorders, ADHD, ODD, CD, and mood disorders.

What are Tics?

Tics are......................

Sudden movements of the body which last only a few seconds at most.

Tics are......................

Repetitive. They can occur many times a minute or only a few per hour.

Tics are......................

Involuntary. A person with tics doesn't do it on purpose. They can not help it.

Tics are......................

Suppressible. A person can stop having tics for awhile, but then they have to. The urge to have the tic becomes stronger and stronger and eventually is irresistible. Sometimes they can be gone for hours at a time.

Tics are......................

Constantly changing. New tics come and old tics leave. Sometimes over days or hours, sometimes over weeks or months.

Tics are......................

A royal pain to have. If they are severe, they make people treat you differently, irritate yourself and family members, and can make certain tasks very hard.

Tics are......................

Embarrassing. This can range from someone asking you why you blink so much to making animal sounds and swear words in public.

Tics are......................

Sometimes hardly noticeable. Most people who have tics would never see a professional for help.

Types of tics

Tics come in three major types. First, there are tics that involve movements of the body. They are called motor tics. Second, there are vocal tics, which involve sounds or words. Thirdly, there are complex tics which can involve complicated sequences of vocal and motor tics.

Motor tics

Usually if a person develops a tic disorder, motor tics appear before vocal tics. The most common tics involve the head. The least common involve the legs.

Head tics

There are many, many muscles in the face and people can make an unlimited number of faces and expressions. It is not a surprise that the muscles of the face account for a good chunk of all tics.

Eye tics

Blinking

Everyone blinks and some people blink a lot. A blinking tic can look like just a lot of normal blinking or it can be very forceful blinking which involves many more movements of the face. Lots of times blinking tics are mistaken for something else such as bad vision or allergies. A lot of blinking tics can give people a headache, make them nauseated, and be the cause of a lot of teasing.

Examples
Janet - what is causing the blinking?

When Janet was 5 years old in grade primary, Her teacher noted that most afternoons she was having trouble seeing. The teacher figured this must be true because Janet was blinking all the time. The teacher called the mother and the mother watched Janet. Yes, at times she did seem to blink a lot. So they brought Janet to the eye doctor. She had a full exam and there was nothing found. The eye doctor suggested that perhaps it was allergies. So, after seeing her family doctor, off she went to the allergist for testing. She was in fact allergic to ragweed and cats, but they didn't own a cat. Finally, the blinking went away just as they were trying to decide what to do next. Everyone in the family would have forgotten about it except a year later she developed vocal tics, just like her cousin in Winnipeg.

Stephen - Captain Blinkers

Stephen had tics for as long as he could remember. Usually they weren't too bad. Now that he was 13, he was hoping he would outgrow them. Over the first month of school he started blinking hard. The blink was enough to make him wince. It was also enough to get him teased. He got the name "Captain Blinkers" and he hated it. Stephen had played hockey all his life but quit the team because of the teasing. That is when they went to see if they could get treatment for it.

Squinting tics

The squinting tics are very common and result in even more trips to the eye doctor. It is usually only when they are accompanied by other tics that they are identified as tics. Like all tics, people are often blamed for them.

Example
David - the teaser?

When David was 7 he started squinting for a few moments at a time. Of course they figured it was a vision problem and brought him to see an eye doctor. She found nothing wrong. That evening David's parents thought they had it figured out. A year ago David's sister got glasses, and now maybe David wanted them to and was doing this on purpose. David kept squinting. Since he was a big teaser anyway, his sister figured he was doing on purpose and the parents tended to believe her. They got on him about it all the time. Nothing could get him to stop it. Then one day David's father came to the door to get David while he was happily playing trucks alone. He was squinting constantly. After a little bit of work, it was identified as a tic disorder

Rolling the eyes

This type of tic rarely is mistaken for eye problems. Sometimes a child will look one direction, like straight up, for a few moments. Other times the eyes will dart back and forth or around. Many times it is thought to be purposeful bugging or just being weird.

Example
Megan - look at me when I am speaking!

Megan was 9 years old and had Attention Deficit Hyperactivity Disorder (ADHD). It wasn't severe, but it certainly made classroom teaching difficult. In April Megan's teacher called to say that Megan's ADHD was much worse. What was going on? Everytime she tried to get Megan to read or listen she was looking all over the place. When the mother started to look for this, she noticed that Megan would often look way over to the right for a few moments, and then come back to looking at something else. She asked Megan what she was looking at. Megan said she wasn't looking at anything, just resting her eyes. the teacher became convinced that this was deliberate. Things seemed to get worse and worse and all of a sudden it stopped over a few days. Everyone was grateful. That is until she started shaking her head a month later.

Lifting eyebrows

This common tic get people into a fair amount of trouble at times. Most children will accuse a child who has this tic of doing it on purpose to tease them. Overall, it is not a common tic on its own and I do not think I have ever seen a child complain of it as their worst tic.

Mouth

Along with the eyes, this is the site of another large percentage of tics. Virtually any combination of movements can appear as a tic. Here are some common ones.

Grimacing

A grimace is in some ways like an overdone smile. Sometimes it only involves the mouth, but often it involves the muscles of the neck also. Often it is only one sided. Most other children will notice a grimacing tic and often will say something about it.

Example
John's face

Over the last few months, John has been asking to go to the washroom a lot. He is in there for quite a while, too. His fourth grade teacher decided one day she would find out what was going on. So she sneaked in and spied on him. she found him walking around the bathroom making all sorts of unusual faces and grimacing. When he came out she asked him why he made those faces. John didn't know, but he tried not to, but sometimes he just had to so he went in the bathroom so no one would see him.

This example shows how some people can suppers a tic for quite awhile, but then have to "let it out"

Twitching

This is one of the most common tics I see in family members of children. Sometimes a family member will tell me that this "nervous twitch" runs in their family. Rarely is it the focus of concern. It is often the kind of mild tic I will pick up in children with ADHD.

Pursing the lips

This tic is kind of like kissing and kind of like blowing up a balloon. It is quite socially disabling and is a tic children will sometimes try to hide if they can. On the other hand, many children will not realize that they are doing it.

Example
Tim and the missing tic

At age 9, Tim started to have this tic. He had never had tics before. He denied that he had this "kissing" tic, as his mother called it. His mother was quite concerned as to how this might be affecting him at school. No, the teacher said, she had never seen him do it there. As she saw it all afternoon and evening, she became more concerned. Eventually she brought Tim to the family doctor who could not see the tic, even though Tim did it in the car on the way to the appointment. He didn't do it in the pediatric psychiatrist's office either. Not during the exam, not during the interview, and not sitting in the waiting room. By chance the doctor walked by as the mother and son where waiting for the elevator to go home. Tim was doing this tic constantly.

Complex Facial Tics

Virtually any expression a person makes can become a facial tic. Lots of time the tics appear to have some emotional state attached to them, as usually we associate that expression with some feeling. A quick sneer, a quick movement of the tongue, the look of a startle, and many others can give people a non-verbal message which doesn't exist. As a result, these tics are very likely to be interpreted wrongly.

Example
Rachel

Rachel had had a few different tics over the years, but only simple motor tics. Now she made a face where she showed her teeth like a dog which is mad for about a second. It did not look friendly. Her friends started to drift away her father commented on how angry she looked all the time. It wasn't until her parents were watching a video of her at her cousins birthday party that they realized her " anger" was this funny movement. Rachel said she wasn't mad, just sad, because she couldn't help doing it.

Neck tics

Hair Tossing

Swinging your head quickly to one side or both is pretty common in people who have bangs that get in their face. When a child has a neck twisting tic like this, the first thought is that their hair is bothering them. The first place such children are taken is not a health professional, but a barber or hair stylist. These tics can be so quick as to be almost unnoticeable, or severe enough to cause neck pain.

Example
Is Jasmine trying to be cool?

Jasmine is 13 years old. She has quite beautiful auburn hair. Over the last few weeks her mom noticed that she was always throwing it around. She just figured she was being a teenager and trying to be like someone on a music video. So one day she came home to find that Jasmine's hair was cut quite short. Her mother was amazed, as Jasmine had always loved her long hair. It was driving me crazy, so I cut it, said Jasmine. After another week, Jasmine's mother noticed she was still throwing her hair around, even though there wasn't hardly any hair to throw. She found Jasmine crying in her room with this tic at its worst. After that they realized that whatever the problem was, it wasn't hair.

Turning and Thrusting

This type of tic is the most likely to cause physical in addition to psychological pain. The movements are socially disabling, but also make it hard to focus on things. They are also hard to hide.

Example
Jody finally takes medications

Jody has had many tics over the years but hasn't really been bothered too much by them. Since he has grown up in the same village all his life, everyone pretty much accepts him with the tics. He occasionally goes and sees a pediatric psychiatrist when they get bad, but usually by the time the appointment comes around, they are getting better. Jody hates taking pills. In fact, he has more than a little phobia about medications and how they might affect him. Now at age 11 he has developed a neck tic in which he thrusts his head forward, and especially his chin. It is so strong it looks like his head is going to be launched right off his body. Unlike his other tics, it is starting to hurt. No one really teases him. One day he came down for breakfast and told his mom, "I have decided to take those tic medicines" She almost fell off her chair.

Body

Tics of the body are less common than tics in the head and face. They are also much easier to disguise into normal body movements as the examples below will show. Lots of times only the tics in the head and neck will be noticed by the child and family. However, on close examination, there are often mild tics of the body, too.

Arms and Hands

Tics in the arms and shoulders usually look like someone startling. Often a person learns to carry this movement that starts out as a tic into a normal movement such as scratching themselves, touching their hair, or reaching for something. The other problem is that these tics can screw up hand work that a person is doing. It is sort of like trying to write in a car when you go over a bump.

Example

Rita can't draw

Rita is 11 years old. She is a very good artist. She loves to draw, and it helps her keep her self esteem up. Rita has a severe learning disability in writing and reading, and it is a good thing that there is something that she is exceptional at in school. Rita had some blinking tics a year or two ago. Now she is on a trial of Ritalin for ADD, and it is helping. But Rita has decided that she will not take it anymore. Why? Because the medication makes her unable to draw. When her teacher and family looked at her crinkled up papers which she had thrown away, they could see the problem. little tears in the paper and short little lines where none belonged. So her doctor had her try to draw and show him what happens. As she was drawing, a tic in her right arm would cause her to make a mistake and often tear the paper.

Trunk and Legs

The most common trunk tics involve sudden twists and thrusts of the hips. It is not hard to imagine how socially disabling these movements can be. While there can be tics in the legs, they are rarely a matter of clinical concern.

Vocal Tics

Vocal tics are sounds that come out suddenly which the person does not want to make. They can be every type of sound or word that the human body can make. Almost all of them are either embarrassing or annoying. There are very few vocal tics that are not either bothering the person, his friends or his family.

Simple Vocal Tics

These are sounds and noises that most people can make but don't. What is unusual isn't the sound, but the frequency. We all sniff, but not 20 times a minute.

Throat Clearing and Coughing

This tic can sound as if it coming from the mouth or from deep inside the body. Often these types of tics are a combination of throat clearing and coughing. Most people will tolerate a fair amount of throat clearing and or coughing before they get annoyed. Often this is assumed to be allergies or a cold to start with.

Example
Andy has a tickle in his throat

At age 7 it seemed Andy was clearing his throat a lot. Andy mentioned that he couldn't help it. It didn't bother his mom much, as she was able to tune it out. It drove his father nuts, as it was worst when Andy was tired in the evening. So they took him to the family doctor and allergists. They waited for spring. Then, the windows would be open and the wood stove wouldn't be on. They kept the dog out of the house. The throat clearing did not get better. At school, he only had it when he had to read aloud. So the father spent a lot of time outside that spring and summer and finally it went away.

Blowing

That the simple action of blowing could be disabling is at first hard to imagine. This tic shows clearly how a simple thing repeated over and over can drive family members around the bend.

Example
Tara's mother is going crazy

At age 8 Tara stopped blinking. Finally, thought her mother, my prayers are answered. Two months later she started making this little blowing sound. She would blow out two quick puffs. It was not very loud. Over the next few weeks it became very frequent. How often? About 10 times a minute. It was even more if she was watching TV or playing nintendo. She did it a little at school, but no one seemed too bothered by it. At home, it was much worse. Tara knew it was a tic. She knew Tara didn't even realize she was doing it most of the time. Her mother became more and more annoyed with it until she stared dreaming of running away. They went to see the doctor who first diagnosed her tic disorder. Tara's mother told the doctor, "either stop these tics or I am going to go nuts."

Sniffing

Sniffing tics almost always are blamed on colds or allergies to start with. They are another tic which, like blowing tics, seems mild enough as long as it isn't too frequent. It is another tic which sometimes is hardly noticed by the person doing the tic. It is almost always noticed by family members and can drive them nuts just like blowing tics.

Example
Jon hates himself

At 13 years old, Jon thought that things were going to finally go his way. He was out of elementary school, he was growing taller and stronger every day, and he was outgrowing his troubles paying attention. But in the last few months, everything has gone downhill in a way he would never have imagined. Jon started sniffing. What was worst was that he flared his nostrils every time he did it. It has been slowly getting more and more frequent. He used to be able to not do it in class, but now he can't. He used to be able to not do it around his girlfriend, but then he started doing it then. Of course that doesn't matter anymore as she just wants to be "friends". He knows the fact that everyone greets him with, "What's up, doc?" probably has something to do with it. So now if people aren't staring or teasing him, they are avoiding him. Jon has never felt this bad.

Whistling

Of all the simple vocal tics, this is usually the most annoying to family members and certainly gets people in trouble at school and with friends. It is another tic that people are often accused of doing on purpose.

Example
Katy goes to the principal's office

At 7 years old Katy is a happy energetic and somewhat hyperactive girl. She is certainly hypertalkative. Unfortunately, she is so distractible in her first grade class that she is in danger of failing. So, she went to her doctor, who diagnosed ADHD, but forgot to check about tics. A year ago Katy had mild sniffing and head twisting tics. They only lasted about 3 weeks. Now she is doing great in school on Ritalin, but she is whistling. It is a very brief whistle which she does a few times a minute. She doesn't think she is doing it. Everytime she does it in class, half the kids go off task and the teacher is going nuts. He figures that since she is on the Ritalin, she must be doing this on purpose. He tells her to stop it, she says she isn't doing anything and gets mad, he sends her to the principals office and she does it there while waiting to see him and gets in more trouble. It takes a lot of work to straighten out that mess!

Other simple sounds

There are many sounds which people make which can not really be described in words. Lots of times I have to have parents demonstrate. The more unusual they get, the more socially disabling they become and the less likely they are mistaken for other medical problems.

Complex vocal tics

These tics are the worst ones. They can be a series of simple sounds, animal sounds, words or phrases. They are all very embarrassing and socially disabling. Luckily, they are not all that common. Nevertheless, these are the tics that people think about first when they think of tic disorders. They are also the kind that are featured in movies, TV shows, and health magazines.

combinations of simple sounds

These are strings of simple vocal tics which a person does in quick succession. Usually they do the same pattern over and over. If they are infrequent, they are manageable, other wise, they can be very rough on a persons life.

Example
Monica likes to be alone now

Monica is 11. She knows she has Tourette's. Sometimes it is gone, sometimes the tics are mild. Sometimes they are not. This new tic is really, really bad. It starts with a click and ends with a fart sound and it is not quiet. Monica has learned that she can't give up on life because of tics. She knows she should not be embarrassed. Everyone at school knows she can't help it. But this is just too much. At recess she goes for walks by herself and does this tic over and over as she has been trying to suppress it all morning. She is walking home from school, even though it is almost 2 km because she can't suppress it on the bus any longer. Her marks are going downhill and her teacher is wondering what is going on. What is going on is Monica is using all her mental energy to not tic, and there isn't much left for school.

Animal sounds

While animal sound tics are not common, they are certainly memorable. If they are present in younger children, they are almost always assumed to be purposeful. When they are present in older children and teenagers, they cause a huge amount of suffering. Even when people understand what they are, there is often a new distance between the person with this tic and the public.

Example
Devin barks

Devin spends a lot of time thinking about the good old days. He is 8, and the good old days were when he was 7. Then he did not have tics. He sometimes just sits around half watching TV and thinking about how great life was without this tic. When he started doing it, everyone thought it was funny, including him. Now he has been barking for 6 months. No one thinks it is funny. He lost his old friends and has some new ones but he has never quite come back to his old self. He has tried medicines but they haven't really helped. He is just hoping and praying that this stops soon. Devin spends a lot of time on the computer talking to other kids with bad tics around the country. He likes that. It has even convinced him to add one year to his plan. Before he had decided to suicide at age 9 if this tic didn't stop. Now he is going to wait until 10.

Words

When most people think of Tourette's, they think of people uncontrollably saying swear words. This is actually quite rare in Tourette's. Less than 20% of people ever get that tic. Again, it is a tic which is often blamed on the child, especially when it occurs in children with ADHD and ODD.

Example
Ben should be suspended forever

Ben is 11. He has had troubles since about age 3 when he was thrown out of daycare for fighting. He is a very aggressive and hyperactive guy. He has a hot temper and most children stay out of his way. Most parents won't let their child near Ben. Ben is not exactly evil, but he has a hard time being good. The medicines he is taking keep him calmer. Over the last few weeks he would say "shit" in class for no real reason. Since there is an aide in class, he was immediately removed. Ben denied saying it. No matter how they dealt with it, the swearing got worse and worse. When the pediatric psychiatrist saw him, he was saying it in the waiting room. Even though she explained to the school that it was a tic and tried to change the medications around to help it, the teacher never did believe her. He always maintained Ben did it on purpose.

Complex tics

Complex tics can be random tics put together, or something that starts to look very much like a habit or compulsion. Some of these are hardly noticed, others are very embarrassing.

Grooming tics

Common grooming tics are things like hair twirling, pulling up socks, and straightening clothes. What makes it a grooming tic? It is usually very repetitive, done the same way each time, done without thinking, and very brief. Rarely are these disabling and they are often not noticed until they go away.

Example

Sarah is better

Sarah had many tics and the worst was a complex vocal tic and head twisting. Eventually the family decided to have Sarah take medications. Thankfully, they worked. What was also amazing was that Sarah stopped playing with her hair all time. Her mother never dreamed that was a tic. When they ran out of medicine for a few days, it came back.

Scratching tics

Brief scratching can be a tic. Again, it is brief, and is always the same. This is the type of tic that gets a medical work up. People are checked for scabies, lice, allergies, and other conditions. Often they are given lotions or creams. The idea that it may be a tic never usually comes up until another tic appears.

Example

What is wrong with Steve's scalp?

Steve's mother always thought he had oily hair. Lately he has started scratching a spot on his hairline behind his ear. He does it all the time. Steve says he gets a funny feeling and he just has to do it. They tried many different shampoos, lotions, and even a buzz cut. It didn't help. Then Steve's cousin came by, who was 14. He told Steve's mother he used to do that, too. The cousin has Tourettes. Steve's mother started looking for tics and sure enough, he had some vocal tics, too.

Sexual tics

Sexual tics can consist of touching one's privates briefly and the same way or making sexual symbols like giving the finger. They are not common. When they do occur, they cause a lot of chaos. If it is older children, it is assumed to be on purpose and they get in trouble. If it occurs in younger children, they are all too often suspected of being victims of abuse.

Example

Tina gets investigated

Tina's teacher called home one day to bring her mother in for a meeting. The teachers sat the mother down and told her what they were seeing. Tina was pulling at her groin a lot. Yes, Tina was doing that at home, too, but the mother didn't have the heart to call and find out if it was going on at school, too. Then the questioning began about possible abuse. Eventually the local Family and Children's services worker interviewed the child. Yes, she said, there is a problem. She had seen a film on Tourettes and thought that was the problem. Tina was blinking all the time, too. Eventually the tic went away and all the excitement died down.

Tic related phenomena

Echoing what others say is common with Tourettes. Sometimes it is a saying, a TV commercial, or just repeating the last few words of what people say. It can be annoying to say the least.

Sensory related tics are tics which start with a particular feeling on the skin. Usually it is not where the tic occurs. For example, a person may state they get a funny feeling over their shoulder and then they have to twist their heads. This type of thing is currently being researched as a better way to classify tics.

Types of tic disorders

There are three different tic disorders. They are Tourette's, Chronic Motor or Vocal tic disorder, and Transient tic disorder. Here are the definitions.

Criteria for Tourette's Syndrome

1. Multiple motor tics and one or more vocal tics have been present at sometime, but not necessarily at the same time.

2. The tics occur many times a day, nearly every day or intermittently throughout a period of more than a year. There is never a tic free period of more than three months in a row.

3. The location, number frequency, complexity and severity of the tics changes over time.

4. Starts before age 18

5.Not due to the direct effect of a substance (stimulants) or a another medical illness.

Example

Paulette has Tourette's

When Paulette was 6 she started having a blinking tic. It went away after a few months. Then she had a snorting tic and a head twisting tic for a few months. That went away and she got a blinking tic again with eye rolling and a clicking tic. These continued for a few months. This pattern went on and on.

Criteria for Chronic Motor or Vocal tic disorder

1. Either motor tics or vocal tics but not both have been present at some time during the illness.

2. The tics occur many times a day, nearly every day or intermittently throughout a period of more than a year. There is never a tic free period of more than three months in a row.

3. The location, number frequency, complexity and severity of the tics changes over time.

4. Starts before age 18

5.Not do to the direct effect of a substance (stimulants) or a another medical illness.

Example

Eddie's nervous twitch

When Eddie turned 4, he started blinking and twitching his face whenever he got tired or under stress. It was almost a perfect way to tell if he was lying, as he always twitched when he lied. It sometimes went away for awhile, but it was always back again soon. It didn't really bother him until Jr. High.

Transient Tic Disorder

1. Either motor tics or vocal tics but not both have been present at some time during the illness.

2. The tics may occur many times a day, nearly every day for at least 4 weeks, but for no longer than 12 months.

4. Starts before age 18

5.Not do to the direct effect of a substance (stimulants) or a another medical illness.

Example

Paul is fine now.

When Paul was 8, he started to have a twisting of his neck and a rolling of the eyes just like his mother's brother had. The mother was very concerned that Paul, too, was going to get Tourette's. An appointment was made to see a doctor. By the time the appointment came, the tic and gone. It never returned.

The tic disorders are more similar than different

Recent research suggests that Chronic Motor or Vocal tic Disorder is very closely related to Tourette's. It is just a milder disorder. Persons with Transient tic disorders can end up getting more serious disorders. The rest of the information about tics in this pamphlet applies to both Chronic Motor or Vocal tic disorder and Tourette's. The separation of these two is really an artifact from a time when they were thought to be quite different disorders.

Course

Recent studies have shown that overall tics become less severe by the time children become adults. If you check out how children who went to a Tourette's clinic when the were little are doing at age 18, researchers have found that in almost half the cases the tics are gone or very minor. The severity of tics as a child is not a good predictor of whether they will be severe at age 18. About 90% of children with severe tics will have almost no tics by age 18. On the other hand, 20 % of children who start out with mild tics will end up with more severe tics. Puberty does not seem to make tics reliably worse. The worst period of time for tics is from ages 8-12. (1) In other cases the comorbid conditions appear (depression, OCD) and the tics become less disabling. If you watch TV and look at magazines, you would think that Tourette's always ends up with severe and embarrassing tics. That is not true. The most common outcome to childhood Tourette's is a mild to moderate tic disorder that is not particularly disabling and then goes away.

Comorbidity

Comorbidity is the tendency for disorders and diseases to occur together. Tic disorders often occur with some other condition. There are many disorders that are more common in children with tic disorders than in children without tics

Mood Disorders

Depression and Manic Depressive disorder are very common in tic disorders. Abut 30 % of children with tics have Depression. Around 10% have mania. That is about ten times the usual frequency of mood disorders.

Behavior problems

Conduct disorder and Oppositional Defiant Disorders are also more common in children with tics. About 20% of kids with tics have conduct disorder. Between 50-80% have oppositional Defiant Disorder. That is about ten times the usual, too.

Anxiety disorders

Major problems with anxiety are present in about 30% of children with tics. That is four times the usual amount.

Obsessive compulsive disorder

This condition is very similar to tic disorders and is present in 25% of those with Tourette's and 7% of those with other tic disorders. That is way over 10 times the amount usually found.

ADHD

In clinics like ours, 90% of children with tics have ADHD. At the lowest it is 50%. That is about 15-20 times as much as in children without tics.

It is very unusual to see a child with Tourettes and no other neuropsychiatric disorder.

How common are tic disorders?

In a community, 1-13% of boys and 1-11% of girls have tics, but not a tic disorder,. More severe Tourette's disorder is found in about 3-5 children out of every 10,000 people. However milder Tourette's is much more common. The most recent studies show that 2.9% of children aged 13-14 have Tourettes. (3) Other tic disorders are quite common. Boys are slightly more likely to have tics than girls. Children are 5-10 times as likely to have tic disorders than adults. In a pediatric psychiatry clinic, tic disorders are not uncommon at all. About 7% have Tourette's and 9% have other tic disorders. It would be unusual for a day to go by in our clinic and not see any tic disorders.

Diagnosing Tic Disorders

In medicine, diagnoses are made by a combination of a history (what the person and family tells you), the physical exam, and lab tests. Here is what you should be looking for.

History

Many times a child will come in with a comorbid problem which is the main concern of the family. ADHD is a common example. No matter what neuropsychiatric problem people come in concerned about, everyone should be asked about tics. Also, they have to be shown what tics are. I model some common tics to show them what I mean.

Other times a child will come in with a certain tic as the main concern. It is important to ask all about that tic, but also other tics and all the other comorbid problems. It is very easy to get preoccupied with a severe or unusual tic and miss the fact that there are a couple of other psychiatric disorders present also.

Part of the history is checking for all sorts of other medical problems that could cause conditions like Tourette's. Since Tics are very strongly inherited, I need to ask about whether othe people in the family have tics or other comorbid disorders

Physical

As noted in the examples above, sometimes a child will supress a tic for the entire visit with me. There are things a person can do in the neurologic exam to bring out tics. Other times I will see the tics when I check their reading, writing and math. Sometimes in comes out when I check their coordination with a soft baseball. Even if I never see a tic, I will still diagnose tics if the history is strong.

Diagnostic tests

Depending on the situation, blood tests for diseases of copper and CT or MRI scans are necessary. However, usually the diagnosis can be confidently determined without any tests. There are not too many things which cause tics.

What can look like Tics but really isn't?

Certain kinds of strokes, certain types of epilepsy, and certain neuropsychiatric drugs can all cause tics, but they usually cause a number of other neuropsychiatric problems, too. It is easy to separate these from tics.

Two rare diseases can also look like tics. One is called Wilson's disease. It involves copper. There are blood tests which can be done to test for this. Huntington's is another disease that can look like this. If that is being considered, sometimes blood tests can be done. A picture of the brain like a CT or MRI will detect this.

What can tics be mistaken for?

The number one, two and three things are purposeful movements. Many people will think a child with Tics is doing it on purpose to bug others.

In summary, if your child has any neuropsychiatric disorder, tics should be looked for. If tics are present, then a thorough psychiatric exam and a neurologic exam are necessary.

[ Next: Types of Tic Disorders and What Can be Done ]

[ Table of Contents ]


Part 2.

Causes of Tics

A lot is known about what is wrong with the brains with persons who have tics. A fair amount is also known about the causes.

Genetics

Tics are very inherited. For example, if you have an identical twin and that twin has tics, then you have a 90% chance of having tics, too. If it is a non-identical twin, you still have a 30% chance. If a parent has tourette's syndrome, about half the male children will have tics or obsessive compulsive disorder (18% will have tourette's, 31% will have chronic tic disorder, and 7% with Obsessive compulsive disorder). The female children will be less likely to be affected ( 5% with Tourette's, 9% with chronic tic disorders) but more will have Obsessive compulsive disorder (17%). Even though it is quite clear it is genetic in some cases, no gene has been found for Tourette's. This probably means what is inherited is not exactly tics.

Infectious

In the last few years it has been discovered that the same bacteria that causes Strept throat can cause something which looks just like tics or obsessive compulsive disorder. The people who get this complication from strep have a characteristic pattern in their genes. In this case the person attacks no only the strept bacteria, but also parts of their own brain. Blood tests can be used to diagnosis this, but the treatment is still unclear. Antibiotics? Kidney Dialysis? both have been tried. It is a rare condition, but should be considered when OCD or tics appear suddenly or suddenly worsen. The disorder is called PANDAS, which stands for Psychiatric And Neurologic Disorder Associated with Strept.

What is going on in the brain of people with tics?

The area of the brain that is involved is called the Basal Ganglia. It is deep in the middle of the brain. These parts of the brain take information from your body and mind and then put it altogether and sift out what is unimportant at the moment so that a person can act and move and think in a coordinated and controlled way. Diseases which affect this part of the brain invariably affect how a person moves or thinks or both.

Figuring out where the problem is difficult. Understanding the chemistry is even more difficult. Most reserachers would agree there is something wrong with the dopamine system. There are definitely problems with that in tic disorders. But the brain is complicated and it is hard to tell what other chemicals are involved and what is causing what. The clear thing is that medications which affect dopamine affect tics.

A lot is known about what causes tics, but a lot isn't. Don't expect a cure in the next few years.

What can be done about tics?

Unfortunately, there is no cure for tics. There is no operation or medication or therapy which can be administered for awhile and have tics go away permanently.

There are treatments for tics which will make them less frequent. There are also a lot of other things that a person can do. There are two main types of strategies to making tics less disabling. First, you can reduce the number of tics in the person. Second, you can work on changing a person or his environment so that tics aren't such a big deal.

Strategy #1 Reducing the severity of the tics.

Non-medical interventions

The things which will make tics less are the same things which will improve all neuropsychiatric disorders. A person needs to be rested, not over stressed, have good nutrition, and not take perscription drugs (or street drugs) which can worsen tics. This sort of intervention can be tics a little better, but rarely makes a huge difference. However, it is worth looking at this in every child.

Sleep

Lack of sleep is very common in our society. Many children with tics will have worse tics if they are over tired. The solution is hard for anyone - either go to sleep earlier or sleep in.

Stress

Some stress is inevitable, but a lot of stress isn't. Tics can sometimes be a barometer of how stressed a child is. In my experience, major family problems can often worsen tics, even if they are caused by the child with the tics.

Nutrition

If you look in libraries and on the internet you will be able to find many diets for tics and related disorders. These do not change the course of tics. However, good nutrition can sometimes help, but not always.

Drugs

Sometimes stimulants for ADHD will worsen tics (see below). In my experience, street drugs and alcohol abuse often is associated with worse tics.

Examples

These examples are the same as in the first section.

Janet

When her vocal tics started, her parents noticed they got worse in the evening and as the week went on. They thought maybe she was tired. They noticed how wound up Video and computer games made her. So they started with a no TV or computer games after 6 pm rule and tried getting her to bed an hour earlier. The tics were still there, still a problem, but better.

Stephen

Besides the blinking tics, Stephen was a picky eater. He mostly ate junk food and almost never ate any fruits or vegetables. Since Steven also had mild ADHD, his mom tried putting him on a low preservative and food coloring diet for ADHD. It didn't do much for the ADHD, but the blinking tics were better.

David

Once David was diagnosed with Tourette's his family hoped things would go better. They didn't. He kept having tics, which was bad. He started getting into bigger and bigger trouble, which was worse. By 13 years, he was going to Shelbourne Youth Centre. His tics were out of control on medications. During his 5 month stay there, he did not get any street drugs. He got a reasonable diet. He got adequate sleep. His tics were 80% better and the medications could be discontinued.

These interventions will help a little in some people, not at all in many, and rarely make a big difference. They are worth trying in everyone.

Medications

There are medications which will suppress tics. That is, they will decrease the severity of the tic disorder, but not cure it. When the medication is stopped, usually the tics will return, unless they have gone away on their own. There are three types of medications which have been found to be effective in tic disorders. Before going into the details of these, there is a much more important question-

How do you decide if you should take medications for tics?

This is a big question because all of these drugs can have minor and major side effects. Here are some guidelines.

The person with the tics can't stand it anymore.

Sometimes a certain tic does not seem that bad to others, but it is overwhelming to the person who has the tic. Living with this tic or group of tics can make them depressed, lose hope, and lose their self-esteem. That is an indication to try medications.

Example
Charnelle is a mess

At age 9, Charnelle is making a very interesting noise which starts with a blowing sound and ends with a click. There are other tics, too, but this is the worst. She can't say exactly why, but this tic is driving her nuts. She says, "It is turning me inside out". So Charnelle was started on medication.

The person with the tic is being teased a lot and it is affecting them.

Sometimes tics can get a whole class or even school teasing a child. This can happen with simple tics like blinking and also many vocal tics. Some children will learn that mimicking a tic will make the child with the tic disorder have more tics. Sometimes this responds to the interventions below (inservices, education). Often it does not. It can make a child socially isolated and, in a child with other comorbid neuropsychiatric conditions, make them give up on school or life.

Example
Ray and Jason

Ray has Tourettes. Jason doesn't. One day on the playground Jason was talking about the Star Wars movies and making the sounds of R2D2. Then he made the association that Ray's tics sounded sort of like that. So they went up to Ray and started making R2D2 noises. Ray tried to ignore them. He supressed the tics. Later in class he started making them. Jason got everyone calling Ray R2D2. Ray got in trouble for trying to hit the people who were saying this. It didn't stop. People started drawing him pictures of R2D2 and putting them on his desk. The teachers tried to stop it, but couldn't. Ray told his mother he had decided to quit 6th grade. He said he was hoping he might drown this summer.

The tics are causing physical pain

This is quite obvious. Tics of the neck often can produce headache or neckache. In these cases it is reasonable to treat the tics. This is not common.

Lousy reasons to take medications

Besides these good reasons are some very bad reasons. Here they are.

The child has a lot of tics in the doctors office.

Although most children have less tics in the office, sometimes they have a lot more. This sometimes convinces doctors that the child should be on medications right away. It doesn't really matter how many tics you have in the office. What matters is how many tics you have elsewhere.

The child has lots and lots of tics

It is tempting to equate severe tics with need for treatment, but it is not the same at all. What is disabling about tics is almost always a social disability. That depends on a lot of things.

Example
Joan has Tourette's

Joan has lived in the same relatively small fishing village all her life. She has had most of the common tics at one point or another and often has quite a few. She also has mild ADHD and she has trouble reading. Everyone knows she has Tourette's. It isn't news. Everyone ignores it. And why wouldn't they? Joann's mother and uncle, both who live around there, also have tic disorders. When Joann went to a pediatrican about asthma, the doctor was amazed by the severity of the tics. The doctor was so amazed by the tics that he wanted her to start treatment right away. Luckily Joan stood up for herself and said she didn't mind the tics.

Tom's mother is nervous

Tom has a lot of tics. Only motor tics, but still a lot of tics. He is 11, he has ADD, and he is super laid back about everything. For once, this is an advantage. People have tried to tease him but since he never seems to react, they give up. Not so with his mother. Every tic he has goes straight to her heart. She worries about these tics in her son. What will happen in the future? Will it stunt his growth? Are others teasing him without us knowing? Is it bothering him deep down? Unfortunately, their family doctor is at the receiving end of a lot of this. So far, with the help of some consults, he has been able to convince her that this is not a reason to medicate Tom.

The tics make someone else very uncomfortable.

Some tics are pretty striking. Often they will bother the person who has them a lot. However, sometimes they don't. If they are truly not bothering the person with the tic, there is no reason to treat the tics medically.

Example
Ashley barks

Ashley is 14. She has Tourettes. She also has had depression and obsessive compulsive disorder. Her bout with severe depression at age 12 sort of changed her. Part of the reason she got so depressed is that she thought she was no good. Well, the treatment worked well! As she was getting better, one bumper sticker stuck in her mind. "God doesn't make junk". This sticker strengthened her faith in God and also in her self. So when she started barking, she wasn't going to let it get her down. People would look at her strangely when she barked. She would look them right in the eye and say, "I've got Tourette's. What are you staring at??" When Ashley went to the new pediatric psychiatrist, the doctor felt very strongly that Ashley should take medications. Why? Mostly because the tics made the doctor feel very uncomfortable.

Details of the Medications

As mentioned above, none of these drugs will cure tics. Many other drugs have been tried, but these are the only ones which have been shown to work better than placebo.

Older Neuroleptics - Haldol (Haldoperidol) and Orap (Pimozide)

These drugs were originally used for schizophrenia. Along the way, they began to be used for tics, specifically Tourette's. They affect the Dopamine system and will often supress tics. The two ones that are mostly used are Haldol (Haldoperidol) and Orap (Pimozide). The doses are started very low - .5 mg to 1.5 mg a day and slowly increased to a maximum of 5-10 mg a day. They do not require any special monitoring before starting.

Side effects

There are two types of side effects of these drugs, those that dissappear quite promptly after stopping the drug and those that can persist for months or more.

While on these drugs a child may have these side effects -

Common (up to one in ten people)

sedation, depression. dry mouth, constipation, tremor, stiffness in the muscles, the walk of an older person, restlessness for no reason.

Even after the drug has stopped they can have -

Movements of their body, especially the face, which they can't stop ( called Tardive Dyskinesia) stiffness and tremor. This occurs in 3-4 % of children who take these medications. With time these usually go away. However, tardive dyskinesia can go on for years after the drug is stopped in some cases. There are medical antidotes to the stiffness and tremor.

·         Overall, these drugs are not that well tolerated over the long haul. As a result, they are only given to people who do not respond to anything else and are very disabled by the tics, as the medication itself is a little disabling. ON the other hand, they are quite effective, cheap, and don’t cause as much weight gain as Risperidal and Zyprexa (see below) These were the only drugs for tics up until about 10 years ago.

Clonidine

This drug affects the adrenaline system in the brain. It is used for all sorts of things from control of blood pressure to menopausal flushing to treating insomnia in children with severe ADHD who are on stimulants. It has been found to be more effective than placebo, but it is certainly not as effective as the neuroleptics. It is a much safer and better tolerated drug. There are no side effects that do not go away quite soon after stopping the drug. Since it can affect the heart, an ECG needs to be checked before it is started. The dose is usually up to 5 micrograms per kilogram. For a 8 year old of average size, 100 to 150 microgram a day would be the range of the dosage. It comes in .025 mg size and .1 mg size. Usually people take it in two to three doses a day. It can take a few weeks to see the full effect.

Side effects

Sedation - this is probably the most common side effect.

Depression - about 1 out of 10-20 people who take this drug can get very depressed. It is impossible to tell the depression from clonidine from the depression which is caused by other things. When this happens, the drug is stopped and it usually clears within 5-8 days.

Abnormal heart rhythm - the most common problem is a slow heart rate. Other problems are very rare, but can happen. As a result, an ECG needs to be checked.

Low blood pressure - although this can happen, at the lower doses used for tics, it is quite unlikely. Blood pressure and pulse does need to be checked.

·         Overall, this is a better tolerated drug. The biggest problem is that it doesn't always work very well on severe tic disorders and it can cause depression. It is used most often in children with mild tics and ADHD, as it can sometimes improve ADHD, too.

Atypical Antipsychotics

These drugs were first used for schizophrenia, and that is how they got this name. Then they were found to be helpful in some children with Tic disorders (2). They are now commonly used for many conditions where people are not psychotic. Overall, these drugs are at least as well tolerated as clonidine. They are at least as effective as the older neuroleptics in tic disorders. (4) They have also been found to be helpful in many other neuropsychiatric disorders, but that research is only just beginning. Specifically, aggressiveness and ADHD can be helped by them.

 

Risperidone (Risperidal)

This drug has been studied the most for pediatric patients. It has been found to be effective in pediatric bipolar disorder using about 1-2 mg a day. About 85% responded. (13) Risperidone is called Risperidal and comes in a variety of sizes; .25mg, .5 mg, 1mg, 2mg and liquid. It also helps Tourettes and Conduct Disorder and psychosis. Usually this is given once or twice a day. This drug usually shows an effect within hours of a dose.

Olanzapine (Zyprexa)

This drug was recently approved for mania in adults. It has been studied less in children. However the early reports are positive. (14) The usual dose is about 5-15 mg a day. It comes in 2.5 mg, 5mg and 10 mg. It is also called Zyprexa. It is more expensive than Risperidone and in adults is associated with more weight gain. This can be given once a day.

Quetiapine (Seroquel)

This drug is a little different than the above ones as it seems to cause very little problems with things like tremor and stiffness. In adolescents it can lower the blood pressure so the dose has to be increased slower. The dosage range is 200-800 mg a day. It has been found to cause the least amount of weight gain in children. There are only a few articles on its use in children and adolescents, but these have been quite positive for mood disorders, but I have not seen articles on its use for Tics. (15) It comes in a 25mg and 100 mg size and has to be given twice a day. It is called Seroquel.

Side Effects

Weight Gain. This is the biggest problem with these drugs in children. Not all kids gain weight, but a fair number can get 10-30lbs or more. Obviously this is something we watch very carefully. Overall Zyprexa causes the most weight gain followed by Risperidal. Seroquel causes minimal weight gain.

Stiffness, restlessness, and tremor - these occasionally happen with these drugs, too, but to a much less extent than with the others. This is reversible if the dosage is reduced or the drug is stopped. Overall it is most common with Risperidal and least common with Seroquel.

Tardive Dyskinesia This is a movement disorder where people can have chewing movements of the mouth, grimacing, head movements, trunk movements and hand movements. The movements are not jerky but smooth and rhythmic.

How do you tell if a child has this movement disorder?

There is a physical exam tool called the AIMS or Abnormal Involuntary Movement Scale which is used to check for dyskinesias. The scale describes all the different kinds of movements in the dyskinesia family. (Click here to go to a copy of this and the instructions.) These were very common with the older antipsychotics, but are less common with the newer drugs. In adults, with the older drugs, these movements can last for months or even years after the drug is stopped. In children taking these newer antipsychotics, the movements almost always disappear within a few months of stopping the drug. Certain things make tardive dyskinesia more likely.

 Low IQ - children with mental retardation are at higher risk

 Dyskinetic movements to start with - If you have some of these movements before you even take the drug, you are more likely to get Tardive Dyskinesia.

 Taking an antipsychotic for a longer time

 Taking Risperidal instead of Olanzepine. In a recent study, no children on Olanzepine ever got Tardive Dyskinesia even though they were on the drug longer than the children on Risperidal.

How common are dyskinesias in children who are not on any drugs?

About 4% of children have these movements. How common is Tardive Dyskinesia with atypical antipsychotics in children? It is impossible to know for sure. A recent study with many children who had mild or borderline mental retardation showed that after a year on atypical antipsychotics at a dose of about 3-4 mg a day, 4 out of 46 (8.5%) had Tardive Dyskinesia. (17)

How do you manage this problem?

Before I ever put a child on an atypical antipsychotic drug, I do an AIMS examination. I recheck it every time I see the child. If I see evidence of new dyskinesias, I discuss with the family what to do. There are a number of things to consider:

  • How bad is the Tardive Dyskinesia? If it is very mild, it probably isn't worth doing much about, however if it is worsening, it is a bigger concern.
  • How severe is the mood disorder we are treating? A slight chewing movement is better than being totally out of control with embarrassing and painful tics.
  • Are there better alternatives? Zyprexa may cause less Tradive Dyskinesia, but what about weight gain?
 Sexual Side effects

Risperdal (risperidone) can increase a hormone in the body called Prolactin. This hormone is normally involved in breast feeding. As a result it can lead to breast enlargement (called gynecomastia), a milk like substance coming out of the breasts (called galactorhea), and irregular periods. While only girls get galactorrhea and mentstral problems, boys can get gynecomastia.

 

This sounds horrible! How often does this happen?

In a recent study of 504 children ages 5-15 who took Risperdal for a year, 22 boys and 3 girls developed gynecomastia, or about 5%. (21)

That sounds like a lot!

The problem is that gynecomastia is quite common in adolescent boys normally. It occurs in about 1/3 of boys. (22)

Does it go away?

In this study, the gynecomastia disappeared while the child was on risperidal in 8 of the 25 who had this side effect. Usually, when the medication is stopped, the gynecomastia disappears, but there have been rare cases where it doesn’t. (21)

Galactorrhea sounds bad, too

Only one of the 85 girls in this study developed galactorrhea. This always resolves when the drug is stopped. The menstral irregularities also usually return to normal if the drug is stopped. (21)

What about the other drugs?

Other drugs in the category almost never cause this side effect.

How can you tell who is going to get this?

You can’t. Even measuring the prolactin level doesn’t predict who will get this. (23)

The bottom line…………..

Sexual side effects are pretty rare, not medically serious, but psychologically devastating to children if they occur and have not been told about it before hand.

 

Neuroleptic Malignant Syndrome This drug may also cause something called Neuroleptic Malignant Syndrome. This is a rare reaction to antipsychotic medication where people are very ill and have a fever, stiffness, and they are not thinking clear. It can be very serious and has even caused deaths. But it is very rare. With the older drugs, it was found in about 3-4 cases out of 1000. With the newer drugs it is harder to say. Risperidone is the most prescribed antipsychotic for children and adults in Canada. In all the world's literature, there are 8 clear cases of Risperidone causing this syndrome in adults (6) I am not aware of any cases in children or adolescents with the newer drugs, but there have been cases with the older drugs. Since the 1960's, 77 cases in children with the older drugs have been published. That would make it very, very, very rare, and rarer still with the newer drugs (7) However, if a child is suddenly changing while taking these medications, it should be considered.  

  •  Psychiatric symptoms These drugs can make a child very anxious, depressed, and even can make them more violent. This is all reversible upon stopping the medication. No drug is more or less likely to do this. My experience is that it affects younger children more often.

 

·         These atypical neuroleptic drugs are the first choice if a person has not responded to Clonidine or they have had severe depression or their tics are very bad. Money can be a problem, but I have always been able to find someone (families, social service) to help pay. I have not yet had to deny these drugs to anyone because of lack of money.
Examples
Megan goes on medications

When Megan started shaking her head, it made her dizzy and she hated it. Everyone was teasing her and she couldn't stand it, so a doctor started her on Clonidine. It worked great for about two weeks. She was taking a half of a pill twice a day. Then she started to get weepy over the littlest thing. Her mom remembered what the doctor said. They stopped the drug and Megan stopped being so weepy, but the tic came right back. So they decided to try Resperidal. The good news is that Megan's mom had Blue Cross coverage through work for medications. Megan started at .5 mg a day and increased that to 1 mg a day a week later. At first the tic was less, but on 1 mg a day it was basically gone. Megan did gain about 10 lbs, but she was a thin girl and looked better with the additional weight. She took it until the summer break, and then they stopped it. The tics came back full speed, so she started it again.

John would rather have tics

John's grimacing became a big problem for him. He was willing to do anything to get rid of it. He was tried on Clondine at 5 mcg per kilogram and it caused no side effects, which was great. It also caused no benefits. So he tried Resperidone. The resperidone helped the tics a little, but his appetite was just out of this world, even on a very low dose. He gained 10 lbs in a little less than a month and he was heavy to start with. His blood tests showed some changes in the liver tests, so they discontinued the resperidone. Since his doctor had not heard of any children on Olanzepine, they tried pimozide. It stopped the tics completely. John was a new man. The only problem is that everyone could tell that John was taking something. He had this vacant look in his eyes. He stopped the Pimozide, the tics came back, and he worked on just not being bugged by them.

Rachel gets lucky

This grimacing was driving her nuts. She went to a doctor about it and a diagnosis of tics was made. Rachel's cousin had tics and a bad temper. He took Clonidine and everything was great. Rachel's dad wondered if it would work for Rachel. She was started on a half pill a day and this was increased eventually to one half in the morning and one at night. It worked great. the tics went away and she had no side effects.

How long to you take the medications?

Assuming they are working and not causing any severe side effects, I usually have people try stopping the drugs every summer to see what happens.

Medications when tics and ADHD are present

As mentioned above, many children have both ADHD and tics. Usually the tics are not the biggest problem, but sometimes they are. It turns out that the main drugs used for ADHD (Ritalin, Dexedrine) can, in some cases, worsen a tic disorder. Sometimes they can make tics that were not even noticeable a problem.

In other words, the drugs that work best for ADHD can make the tics worse.

The most recent data suggests that when children with tic disorders take stimulants, one of three things happen:

1. The tics worsen significantly and the medicine for ADHD has to be changed or stopped. This happens about 25% of the time. When the medication for ADHD is stopped, the tics get better over a few days to a couple of weeks.

2. The tics worsen slightly or not at all. This happens in about 70% of cases.

3. The tics actually improve. This is rare, but it happens.

So what to do?

There are two strategies in my mind for dealing with this combination.

1. ADHD is disabling, but the tics are really quite mild

I would start the child on one of the standard medications for tics and watch the tics carefully to see if the child turns out to be one of those with a major worsening of tics with ADHD medication. If this turned out to be the case, I would then start a medicine for tics first, and then add a medication for tics.

2. ADHD is disabling and the tics are pretty bad.

I would start a drug for tics first. Sometimes these drugs help the ADHD, too. If not I would then add a drug for ADHD.

Medications for tics plus other comorbid neuropsychiatric conditions. With a few rare exceptions, the other drugs for depression, anxiety, and obsessive compulsive disorder do not worsen or improve tics. Often people with disabling tics plus another condition will need to take multiple medications.

·         When ADHD and tics are present, medication is often useful. However, you need to carefully monitor both conditions.

 

Strategy #2 Working on changing the person and the environment so that the tics are not such a big deal.

As mentioned above, most of the disability of tics is social. So one way to help people with tics is to make them not see tics as so disabling. This usually involves the child, family, and school.

Child

Many children with tics don't understand what is going on. They think they are the only one who has them. Children, as much as adults, need to understand what Tics are, communicate with others who have tics, and realize that they are not the tics, but only a person who has tics.

This can be done in a number of ways.

The doctor who cares for the child needs to explain what is going on to the child.

Videos and books appropriate for the child's age need to be looked at with the parents.

This is not always easy. The best source is the Tourette's society. The can be reached by phone, mail, or e-mail.

Talk to the child about the tics.

Parents and doctors need to constantly reinforce the view that the tics are separate from the child. You need to model how to deal with staring or ignorant comments.

The child needs to talk with others who have tics.

Examples
Jasmine

Jasmine really isolated herself because of her hair throwing tic. Certainly medication was worth pursuing. At the same time that the medication was started, Jasmine sat down with the doctor and her parents and talked about how the tics made her feel. She couldn't. So, the doctor had her write a pretend letter to the tics. She brought it the next time to the doctor. Now she could tell him. She was so mad that this had happened to her and she really needed to tell someone. She did. She told her mom and dad a lot. They listened, and then they cried themselves. After a couple months, she had gotten out a lot of her anger. Her tics were better, not gone, on account of some Clondine. Just as importantly, she had was able to live with the tics rather than have it drive her nuts with anger.

Jody is wrong

When Jody's thrusting tics got so much worse, he got very scared. He thought that the tics would get worse and worse and eventually he would die. He also thought that he had done something to make them worse. After a lot of talking between doctor and family, her realized this wasn't so. It was a big relief.

Rita isn't the only one

Rita hated her tics. When she looked at a video on Tourette's, it made her feel a lot better. She realized other people had tics. She also realized that a lot of other people had it much worse than her. It wasn't a very nice thought, but it did make it easy for her to know that she had only mild tics.

Monica needs to talk

Well, Monica ended up taking Resperidone and it worked. She also gained 15 lbs. She was a little plump before and this just convinced her again about the hopelessness of everything. She knew that being fat was better than the tics, but she still didn't like it. Her doctor, parents, and teachers tried to talk to her, but she kept saying," that's easy for you to say. You don't have Tourette's." So, Monica and her mother worked on getting her connected with others who have the same problem. It turned out that there was no meeting in Halifax for a few months. So, she tried a chat group for tics on the internet. She always denied that she liked it, but never missed a day. What really helped is that her doctor hooked her up with another girl with bad tics. They talked on the phone. Alot. Finally, her mom figured it would be cheaper to drive up to Digby for the day rather than talk on the phone. They did. Now Monica and this other girl help each other. Her mom cried when she saw Monica and this other girl laughing about tics.

Family

A lot of the disability of tics happens at home. Children often supress tics until they get home. They can be worse when they are tired, which is often at home. Siblings will echo tics to tease a child and make their tics worse. While motor tics are a little disabling in the home, it is usually the vocal tics which cause the most problem. Hearing these sounds over and over sensitizes parents such that it bugs them more and more. Often one of the reasons cited for trying medications is that a parent is being driven nuts by a vocal tic. Often the biggest part of the solution is medications. However, other things are also important.

Don't bug the person about the tics.

It is very tempting to tell people to please stop doing a certain tic. It is hard to imagine that they are not doing it on purpose to bug you. It is a very bad thing to do. It makes it seem to the child that they can control the tic. They would probably stop it if they could. But how can you not say this when a tic is driving you absolutely nuts? Here are some ideas

You can't be driven nuts if you can't hear the tic.

The best solution is a walkman with headphones for the person who is being driven nuts by the tics. You can turn it up just loud enough so that you can't hear the tics but loud enough to hear phones and children fighting. Other ideas are to put the child or yourself outside a lot of the time. Or move the TV and or computer farther away from the kitchen.

Spending a little less time with the child when their tics are at their worst for awhile is often helpful.

Just going for a walk after supper (if that's when the tics are bothering you most) can be a great idea.

Usually one parent is less bothered by the tics than the other. Take advantage of this.

If you must comment about the tics, say things like, "I sure will be glad when that tic goes away" or "I love you Jenna, but I sure hate that stupid tic" rather than " I'd like to duct tape your mouth shut for just one hour".

Support groups.

The best if it is face to face, next best as telephone contacts, and of course, there are internet Tourette's support groups.

Examples

Andy's tickle returns

When fall came back, so did Andy's throat clearing. Unfortunately, Andy's Dad threw his back out lifting, and was at home a lot. So he heard it a lot. At night his Dad was telling his mom how that throat clearing was driving him nuts. They went to the doctor, it got diagnosed correctly as a tic, but it still bugged him. Andy's Dad was super nervous about medications, but what to do? they talked to another parent through the Tourette's society and presented it to a internet group. They noted when the tics were most and when they were least. They were least when he was outside playing and most when he was inside watching TV and doing school work. So, Andy's Dad spent most of his time with Andy outside. They played ball, built a camp in the woods together, and his Dad helped coach soccer. Inside, Andy and his Dad didn't spend much time together. They put the TV downstairs. Andy's Dad did the vaccuming. Eventually, the tic didn't bother him quite so much.

Tara's tics and Tara's mother

Tara started taking Clonidine. It didn't work. She started Resperidone. It made her sick to her stomach. She tried Olazepine. She got a rash. After a few drug trials, Tara's mother resigned herself to the fact that she couldn't let these tics drive her around the bend. At that point she was much more willing to try. So the doctor and the family met. Tara and her mom decided to go for a walk each morning before school, or if the weather was lousy, play a game together. This was the time when the tics were the least. Tara's mother made a promise that she would not mention the tics to Tara. Instead, she talked (via the internet) with some other parents and went to the support group meetings in Halifax every couple months. Everyone worked on learning more about Tourette's. Well, by the time all this was in place, that tic was pretty well gone. But, thought her mother, we will be ready for the next one!

School and Play

The disability of tics at school is partly a function of the tics, but partly a function of how much people are teasing and how much they know about tics. Often it is just as important to correct some of this teasing and these misconceptions about tics as it is to medicate.

Examples

Jon's school

Since most of Jim's tic problems were due to teasing at school, it seemed like it would be reasonable to address their ignorance. After all, medication might help Jim's tics, but it wasn't going to do much for their ignorance. Jim, his parents, and his principal and his doctor sat down together to figure out what to do. They came up with a plan. First, the school would have an inservice on Tourettes. It turns out that the Tourette's foundation of Nova Scotia does this. Jim would not be labelled, but his tics would be specifically mentioned. Jon would work on trying to ignore the teasing. The monitors would be on the lookout for it, too, and nail the kids who were doing it. The "punishment"? a report on Tourette's done by the kids who get nailed for teasing. The principal knew exactly who was doing the most teasing. He would contact the parent's after the inservice. Jim didn't think this would help, but it actually did.

Katy and the endless meetings

As this case shows, it isn't just the children who can be ignorant! Everyone was mad. Katy at everyone, Her parents at the school and the doctor, The school at the parents, and the doctor at herself for not keeping everyone informed about how tics could worsen. So first everyone had a lot to get off their chests. Then, the doctor explained what happened. Then they figured out what to do to make sure this didn't happen again. That turned out to be complete sharing of information between the doctor, parents, and school. There were to be regular meetings to make sure they nipped any more problems at the bud. Katy was apologized to. And everyone one came to an inservice on Tourette's and ADHD that the doctor put on with the Tourette's Society.

Devin and the cruel world

So Devin decided that he wanted to go to an overnight camp again this year. He went for a week last year and loved it. They got the registration form and filled it in. His parents were quite blunt about his tics. They mentioned that he had a barking tic and that he could not control it. No problem said the camp director. He suggested that maybe a certain camp session would be best, as there were other special needs kids there. His Dad didn't think much of it, but after a few weeks started to wonder what that really meant. When they came to bring him to camp, they learned. Most of the other campers were in wheelchairs. As his mother said, "almost everyone was retarded or worse". Devin was cried, his parents absolutely exploded. The camp director could not understand it. He could see Devin making those barking sounds. Devin to him appeared retarded as a result. Devin did not go to that camp. He did go to swimming lessons and they went on a trip to Ottawa. Devin's parents contacted numerous government agencies and the Tourette's Society. Nothing helped. They hired a lawyer to go after the camp. All of a sudden, the camp was interested in an in-service on Tourette's. Devin went to camp there the next year. Everything went fine.

In Summary,

Tics can be anything from a mild nuisance to a source of great suffering. They are frequently accompanied by other neuropsychiatric disorders which are often more disabling than the tics. The first thing to do about tics is understand and learn about them. If they are disabling, you need to look at ways to reduce the severity of the tics. Just as important is learning how to live with this disability and how to fight ignorance in of tics at school, work, and play.

[ Previous: What are Tics? ]

[ Table of Contents ]