New approach for those with Tourette Syndrome being tested in clinical trials

Medical researchers are hopeful that a new investigational drug being tested in clinical trials will prove to be an effective treatment for Tourette Syndrome – an inherited, misdiagnosed, misunderstood neurological disorder that presents in childhood and causes involuntary motor and vocal tics.

The new drug, AZD5213, targets the human histamine H3 receptor.  In the brain, this receptor regulates neurotransmitters associated with Tourette Syndrome – including dopamine and histamine.A mutation that affects histamine synthesis was recently confirmed to be the cause of TS in a father and all eight of his children, a finding supported by research in mice.

If approved for treatment of Tourette, AZD5213 might represent an alternative to antipsychotics, which don’t work well in all patients and can cause serious negative side effects.  Discovered by AstraZeneca, AZD5213 has been shown to have a favorable safety profile, with no serious drug-related side effects reported in Phase 1 and Phase 2 clinical trials completed at the time of this report.

“AZD5213 represents an exciting new approach to the treatment of Tourette Syndrome, and we are currently recruiting teenagers suffering from the disorder to participate in the clinical trial,” says Dr. Roger Kurlan, Director of the Movement Disorders Program at Overlook Medical Center’s Atlantic Neuroscience Institute in Summit, N.J.

Dr. Kurlan, who frequently collaborates with the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) in Somerville, N.J., is a leading expert in the treatment of Tourette and is one of approximately six medical researchers involved in the clinical trial.

AZD5213 already has been studied in other clinical trials, including those for Alzheimer’s disease. With Tourette Syndrome, which is associated with changes in brain chemistry that appear to cause the characteristic symptoms of the disorder, AZD5213 might be able to counteract these changes – with the potential to provide symptomatic relief with less of the negative side effects associated with existing treatments.  More than 200 human subjects have already received single or multiple doses of AZD5213, with no serious drug-related adverse side effects.

The clinical trial is a 6-month, multicenter, randomized, safety, tolerability, pharmacokinetic, and preliminary efficacy study of AZD5213 in adolescents 12 to 17 years of age with Tourette Syndrome. The trial includes an up to 21-day screening period, 6 months of once-daily treatment with placebo or AZD5213, and a 3-week follow-up period.

Because of the crossover design of the trial, all enrolled patients will receive AZD5213 for at least part of the trial. Approximately 24 subjects will be treated in this study.  Safety will be carefully ensured by a battery of safety tests administered at visits throughout the study, and efficacy will be determined by means of questionnaires designed to assess the severity of symptoms associated with Tourette Syndrome.

According to the Centers for Disease Control and Prevention (CDC), 1 in 100 children show signs of Tourette Syndrome. The disorder is three times as likely in boys as in girls, and most patients experience their worst symptoms in their early teen years. There is no cure, and symptoms can persist throughout life – although most patients see improvement as they approach and enter adulthood.

Exaggerated portrayals of Tourette Syndrome have been used for comic relief in films and TV shows, usually featuring characters who shout obscenities involuntarily. In reality, this type of verbal tic – known as coprolalia – is present in only 10 to 15 percent of those with TS.

“In real life, Tourette’s is no laughing matter,” Dr. Kurlan says. “These patients often struggle with self-esteem and socialization issues, which generally arise at a crucial time in their social development. Sadly, many are victims of bullying and the ridicule of their peers.”

Tourette’s is most often present in combination with other neurological disorders, such as attention deficit-hyperactivity disorder (ADHD) or obsessive-compulsive disorder (OCD), and Tourette’s patients are commonly troubled by depression, anxiety and developmental delays.

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Coprolalia, Part 3: Taking Action on Coprolalia

In case you missed them, part 1 of this series discussed the nature of coprolalia. Part 2 talked aboutcoping with coprolalia. In part 3, we’ll mention some action steps you can take when dealing with coprolalia.

Use positive language

Planned ignoring of coprolalia is not just ignoring the symptom altogether especially if the behavior is having a negative or harmful impact on the individual or other members of the family.  Be sure to define what negative or harmful impact means for your family.

An individual can contribute to the family’s well being whilst consistently ticcing “F**k, f**k”.  It is not harmful just because you or someone else does not  particularly want to hear it.  In fact, a tic as harmless as this example may actually be helpful in directing the individual’s attention away from more harmful forms of coprolalia.

When helping to redirect behaviours that are harmful or have  negative impact, use positive language at all times. If coprolalia is loud enough or involves another person you can use positive language to help modify the behavior or make it less hurtful.

For example, “You may say “F**k” but you need to increase the distance from your brother’s ear when you say it”. If coprolalia hurts another person’s feelings you can use positive language to teach responsibility. For example, “You looked at your brother and called him a name.  You didn’t mean to, but you hurt your brother’s feelings.  You should apologize and make sure he is OK.”  Note: This is not apologizing for having Tourette Syndrome and for having tics, it is an apology for having potentially hurt someone’s feelings (a natural consequence).

Use substitution words

Substitution words are words or phrases that can be strategically placed to modify coprolalia.  The important aspect of this technique is that the child must be involved and the word or phrase must satisfy the tic.  The individual using this technique must also be highly motivated to attempt to modify the behavior.  If they are not invested, this strategy  will not work.

Always investigate motivation and the ability to invest mental energy into this task.  A child who suppresses tics all day and is mentally exhausted will not benefit from mom or dad saying, “Now Johnny, say Fruit Cake, not F***.” Willingness and readiness is essential and it is okay to put this task aside indefinitely if necessary.

If there is enough motivation and investment from the individual, involve them  with coming up with words that are similar enough to satisfy the tic but may be less offensive. For example, “Shitake” or “Fruit cake”. If the tic is not satisfied the individual is essentially suppressing the tic, causing more focus on the actual tic and increasing stress.  Increasing stress on the individual is counter-productive to managing coprolalia.

Be Accountable and Responsible

At first glance, being accountable and responsible for your own or your child’s symptoms of coprolalia may seem harsh.  Coprolalia is an uncontrollable symptom of a neurological disorder.  This is true.  They can’t help it and it is not their fault.  However, consider that being accountable and responsible does not involve finding fault or laying blame.

For example –  you step on someone’s toe while waiting in line.  It was an accident, the other person will assume it was an accident and it wasn’t done on purpose.  You would apologize and ask if the other person was OK.  You take responsibility and you are accountable for the action however unintended and unwanted.  If you sneeze, you may apologize or excuse yourself, if you trip and bump someone you would apologize, if you were startled and screamed and scared someone else you would apologize and or explain.

The same should apply to tics and coprolalia which have an impact on others.  It does not imply that the individual is willfully or maliciously doing the act.  For example, my son has a screaming tic and when his screaming tic and his coprolalia occur together he is screaming profanities.  Everyone in our home knows that it is unintentional and an uncontrollable symptom of his Tourette Syndrome.

However, sometimes it hurts!  It can hurt our ears, it can startle us, it can shock our neighbours and it can hurt our feelings.  As a mom with a young son who has a “f***ing b**** a**hole” tic, being barraged daily with these words, I can say that it hurts, it wears me down, and it makes me sad.  No harm is intended and no blame is laid but if he apologizes, it does a few positive things for us all.

Being responsible and accountable for his neurological symptoms gives him power!

• He can teach others about his symptoms and his disorder and promote understanding.  ”Sorry,  I didn’t mean to scare you.  I have Tourette Syndrome and that was something I can’t control.  I can tell you more about it if you would like.”
• He can control the affects of his symptoms on others.  He can change how others feel and think about him.  ”Sorry, that was an accident.  I have Tourette Syndrome.  I sometimes do things I don’t mean to do.  I didn’t mean to do that.”
• He will become a powerful social thinker!  He learns to care about what others see of his actions and how they feel about him.  Being accountable and responsible means “I know I did something that may have affected you negatively, I care, I am sorry and I did not mean to do that to you”.  He will grow to be a caring and kind adult.

Being responsible and accountable for his neurological symptoms makes others feel better!

• Just like stepping on my toe, my son saying sorry to me for saying “F**k you” makes me feel better.  I know he can’t help it but by apologizing I also know he didn’t mean it and that he cares about my feelings.
• Apologizing or acknowledging the coprolalia also enlightens others, makes them smarter and more tolerant of others.  They probably didn’t know it was unintended until there was the apology and explanation.  How could they?
• Promote understanding by educating others.  Promote tolerance through understanding.  Please share.

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Coprolalia, Part 1: The Nature of Coprolalia

The term coprolalia is used to describe involuntary vocalizations that are obscene or socially inappropriate.  Coprolalia includes swearing, but also includes saying things that are culturally taboo, socially unacceptable or inappropriate because of age or context.

For example, a child using any kind of obscene language, or anyone saying negative comments about another’s ethnicity or physical appearance. Coprolalia may also refer to these phrases or words being said inside the persons head or kept to themselves which also causes internal distress for the individual.

Coprolalia can be a symptom of some neurological disorders as well as certain brain injuries.  Coprolalia occurs  as a symptom in only about 10 percent of people with Tourette Syndrome.Copopraxia are gestures and actions of the same nature as coprolalia.

Coprolalia can occur in Obsessive Compulsive Disorder as well as Tourette Syndrome.  People who have Obsessive Compulsive Disorder as well as Tourette Syndrome have a greater struggle as the two disorders may interact with and/or perpetuate coprolalia.   The obsession with performing, (or not performing), the inappropriate behavior provokes the urge to perform the inappropriate behavior and vice versa.

Coprolalia is a particularly distressing symptom for people with Tourette Syndrome.  The nature of coprolalia, being socially inappropriate, makes everyone involved uncomfortable, that is, until everyone understands what coprolalia is and why it occurs.

Education about coprolalia being involuntary and a symptom of a neurochemical disorder isessential to bring about acceptance and understanding.  Coprolalia can be a lifelong struggle  and the individual deserves understanding and acceptance.  Coprolalia must be accepted by the family.

People with coprolalia feel embarrassed and ashamed of their symptoms.  Often, the response to coprolalia and the lack of understanding and acceptance from other people amplifies the individual’s shame and embarrassment, leading to isolation.  Fear of performing the tic in public and being constantly scrutinized and judged may also lead to isolation and depression.  In addition, it drives the individual to constantly think about their coprolalia symptoms, in turn making the coprolalia occur more often.  In this way,  benign symptoms of coprolalia become malignant due to the stigmatization and judgment of the onlookers.

DIFFICULTIES IN UNDERSTANDING COPROLALIA

Unfortunately, coprolalia may be expressed in complex and variable ways, further leading to the misunderstanding of the involuntary nature of the behavior.

A Misunderstanding of Provocation

Coprolalia, like other tics, is prompted by a premonitory urge. For example, racial slurs may be prompted by seeing a person of a particular race, sexual comments may be prompted by seeing a member of the opposite sex.  Seeing these people reminds the brain of forbidden/unacceptable words.  Coprolalia is somehow co-exists alongside the faulty autoinhibitory functions within the brain.  When faced with a person of the opposite sex, the sufferer may quickly think “I’d better not say “_______”.

By thinking this thought, the individual has put the offensive phrase into their own mind.  He/she will then be stuck with the phrase in their head.  Coupled with poor impulsivity control, it can appear as if the person is willingly thinking the thought and then saying it without concern for the other person’s feelings.

In truth, coprolalia has no relationship or meaning to the observed person and is not a personal attack.  There just happened to be something within the environment that prompted that particular urge.  For the person with coprolalia, they struggle to prevent themselves from saying or doing the worst possible thing in the particular situation.

Imagine having to sit in a church or other place of worship.  The mere sight of religious icons evokes meaning in our brains.  This meaning cues the brain and conjures words (good and bad).  A sufferer of coprolalia will focus on restraining themselves from shouting offensive words.  This focus will bring these words to the tip of his/her tongue, and eventually out of the mouth.

The struggle is internal and far more painful for the individual than those who may overhear the utterance. Coprolalia is not directed at other people nor intended to cause harm or fear in others.  Oddly enough, the more a sufferer wants to STOP saying an offensive word, the more likely they are to say it – because of their focus.

Incorporation into Speech

Another confusing aspect about the expression of coprolalia involves the incorporation of coprolalia into regular speech and actions.  This phenomenon is more common in children.  The urge to say the word may be strong enough that it will occur within the context of speech.  The tic is somewhat satisfied for the child however, it very much appears as being a voluntary addition.

Consider the F_ word as a vocal tic that is coprolalia.  The child may voluntarily slip it into speech in a fluent way, satisfying the tic but being unaware of how voluntary the tic appears to be to others.  For example, “That f_ing dog just f_ing barked at me”.  This is very difficult for others (especially parents and teachers) to understand.

I remember telling my child, when coprolalia began for him, to just pick one or two of the words and say them out of a sentence so people would more easily identify it as coprolalia!  This strategy didn’t work because he doesn’t have the option to choose which tics he says,  and because he never really understood why it would make a difference how or when it was expressed.  To him, slipping it into speech was more “normal” than randomly shouting a bad word.

Intensity and Frequency Changes

Another difficult characteristic of coprolalia that further impedes understanding is that stress increases tic frequency and intensity.   Parents of children with Tourette Syndrome are very familiar with this phenomena.   Both negative or positive stress occupy mental attention.  In these situations, a child has less mental energy to suppress his/her tic symptoms.  As a result, more tics are expressed, to conserve mental energy for all the other things that are consuming the child’s mental resources.  Consider that anger, disappointment and frustration are major stresses.  When a child attends to these negative emotions, they do not expend energy on suppressing their tics or coprolalia.

In a situation that provokes strong feelings of anger in the child, tics and coprolalia escalate.  In this type of situation, you will have a child who is angry, using inappropriate language, and louder because you have asked them to do something like “Come do your homework now, please.”  What looks like a child reacting disrespectfully and aggressively may simply be a child reacting to a strong emotion, increasing tic expression due to the displacement of mental focus to the emotion.

This situation is extremely difficult to manage and creates intense stress on families living with neurological disorders.  Education about the disorders, symptoms, and their expressions lay the groundwork to understanding, managing and accepting coprolalia.

In Coprolalia Part 2, strategies for understanding, accepting and managing coprolalia will be discussed.  Understanding coprolalia and the nature of its expression will be essential when employing strategies and educating others about your or your child’s symptoms.

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The ‘extra’ factor

Sam Findlay and his mother, Claire, who is the co-ordinator of the North Yorkshire Tourette’s Action support group

TOURETTE'S Syndrome can often be misunderstood but people must think before they react, Claire Findlay tells health reporter Kate Liptrot.

When told her eight-year-old son, Sam, had Tourette's Syndrome, Claire Findlay and her family struggled to cope with the diagnosis.

“It’s difficult coming to terms with it in the first place,” she said. “The process of coming to terms with and researching Sam’s condition has been a long one. We are still learning new things all the time and it’s been eight years.”

The difficulty in knowing what to do next is an experience faced by many families dealing with the sometimes socially challenging neurological condition thought to affect one schoolchild in every 100.

Tourette’s Syndrome is characterised by a combination of involuntary noises and movements called tics, but the condition can be different for each person and can often be linked to other conditions such as OCD and ADHD. For Sam, Tourette’s Syndrome means he often repeats actions or phrases, and can involuntarily swear.

Now 16, he is doing very well – studying to be a chef at York College, with ambitions to run his own restaurant, and working part-time in the kitchens of the Melbourne Arms near Pocklington.

But it has been a long journey for Sam, who was told to stop coming into a previous job because the manager said he was making “annoying noises” and was sometimes deliberately goaded by other children at school, triggering his tics to the extent it would hurt him. The problem became so bad he had to wear boxing training gloves to school at one stage to avoid harming himself.

“Sam would come through the door having been so wound up on the bus he was hitting things, hitting the walls, not through temper but through the tic,” Claire said.

“School life for Sam was not easy. It was very difficult in the beginning to make school understand that what Sam was doing was not his fault.

“While we were coming to terms with it, we had school constantly telling him off and on one occasion telling us to take him home. They just didn’t know how to deal with it.

“Sam experienced a quiet period with his tics until he was 11 when they exploded.

“Needless to say, the school didn’t cope very well at first and it’s been a bumpy ride ever since, although through it all we had a close relationship with his head of year and she has been brilliant along with some other key members of staff.

“Awareness in education is so important. It took years to find the strength to fight for Sam, to make sure he got the education he deserved.”

When she looks back at home videos, Claire can see the signs of Sam’s Tourette’s Syndrome as young as three or four-years-old through his blinking, nose rubbing and sniffing.

Diagnosed with ADHD at six, his tics seemed to be triggered by his medication for the condition, and he was diagnosed with Tourette’s Syndrome two years later.

His family has found many people working with young people – from teachers to doctors – often have little understanding of his condition.

But it was about two years ago, after years of the family coping on their own, Claire said they started meeting other people with the condition through the charity Tourette’s Action.

“I have met so many fantastic people who have either been through, are going through, or are just about to start the journey we are on,” Claire said. “I can’t explain how it feels to be in the company of this new family. Everyone just gets it. There are no explanations, no judgement and no stress.”

Claire, her husband, Adam, and Sam now coordinate The North Yorkshire Tourette’s Action support group and Sam has featured in last year’s series of The Food Hospital, which worked on his diet to make a difference to his condition.

To the families of other children diagnosed with Tourette’s Syndrome, Claire said: “Remember they are still the same child. They have not changed. It just happens there’s a little bit something extra there that is never going to be the same as it changes all the time. Take it as it comes.”

Tourette’s Syndrome The facts

• Someone with TS may be able to suppress their tics for a period but eventually they have to let them out

• Tics usually start in childhood at about the age of seven, and are usually worst between ten to 12 years. In approximately half cases, most symptoms disappear by the age of 18

• More than 85 per cent of people with TS have more than just tics. Additional conditions include obsessive compulsive disorder (OCD) as well as attention deficit hyperactivity disorder (ADHD). Children and adults may also suffer from “rages”

• Affects include copropraxia, the making of obscene or otherwise unacceptable movements or gestures; coprolalia, using obscene or unacceptable language; coprophenomena, the involuntary expression of socially unacceptable words or gestures and echophenomena - repeating other people’s words and other people’s gestures (echopraxia)

• It is commonly assumed that everybody with TS swears. However, only ten per cent of people with TS have a swearing tic.

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10 Tourette Syndrome Myths

Those who have Tourette Syndrome are likely to encounter loads of misinformation and those who don’t understand the disease on a regular basis.  What Tourette Syndrome is and is not can be as confusing for both those who live with it as those who do not.  To help paint a clearer picture, we have gathered a few myths surrounding TS.

1. More swearing – It is a common myth that those with TS swear often and uncontrollably.  In reality, only a small percentage of those with Tourette’s Syndrome have obscenity specific outbursts.  In fact, there is a special name for it: coprolalia.
2. They are mentally challenged – Tourette Syndrome is not like Down’s Syndrome or cerebral palsy.  It is a neurological disorder that is characterized by involuntary movement and speech tics.
3. It is extremely rare – It is estimated that every 1 in 100 children suffers from Tourette Syndrome, a higher number than those with autism.  Most of them go undiagnosed and misunderstood.
4. Tourette Syndrome can be managed with concentration – Because TS stems from a chemical imbalance in the brain, there is no voluntary aspect to it whatsoever.  No matter how hard someone with TS concentrates, tics can still come.
5. Only caucasians can get Tourette Syndrome – As with most diseases and disorders, anyone from any race is capable of being born with TS.
6. TS is debilitating – Most people with Tourette Syndrome can go on to lead rich, fulfilling lives and take part in just about any activity as anyone else, especially if they are cared for properly.
7. Tourette Syndrome stems from psychological trauma – This was the prevailing thought when TS first began to get diagnosed about a century ago.  Now, sophisticated imaging technology shows us that it is a neurological disorder.
8. Those with TS can’t do jobs with fine motor functions – Another false truth, famous Canadian surgeon Dr. Matt Doran was able to do complex procedures even though he had Tourette Syndrome.
9. They can’t be athletes – How far can someone with the involuntary tics associated with TS go in the sports world?  For Jim Eisenreich, all the way to the World Series of Major League Baseball in 1997.
10. It gets worse as you get older – While some neurological disorders get worse with age, it is not generally so with Tourette Syndrome.  In fact, many who suffer from it go through the worst during adolescence and can even outgrow their tics in adulthood.

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Coprolalia

Coprolalia is a neurological condition that affects the speech impulses and results in the uncontrollable and involuntary use of swear words, derogatory words, or other words or phrases that tend to be considered offensive or socially unacceptable. In addition to the sudden outburst of words, the speech itself may be louder or spoken in a different tone than normal. This condition tends to be associated as a symptom of Tourette's syndrome, a neurological disorder that causes tics, or uncontrollable movements. Less commonly, this involuntary swearing may be a symptom of other neurological impairments.

Although coprolalia is often mainly associated with a person involuntarily saying swear words, it can involve the usage of any words that are considered inappropriate for a social situation. For instance, a person with the condition may involuntarily blurt out racial slurs or use words that may be considered vulgar. This can result in severe embarrassment or social anxiety for people with the condition. In addition to speaking words aloud, the condition may also cause a person to mentally repeat inappropriate words, making it difficult to concentrate.

Coprolalia is thought to be the result of a type of malfunctioning of certain neurotransmitters, which are chemicals that the brain transports throughout the body. Neurotransmitters deliver messages to different areas of the body from the brain that trigger movements or other actions. If something goes wrong with the transportation of neurotransmitters, it may cause the body to mistakenly cause impulses that the brain did not want triggered. This may result in uncontrollable movements and speech. It is not conclusively known what causes a person’s brain to have these neurotransmitter malfunctions, but genetics is thought to be a possible culprit.

Since the precise cause of coprolalia is not known for sure, the condition does not have a proven cure; however, it can be treated to reduce the prevalence and severity of the uncontrollable outbursts. One of the most common types of possible treatment option is the usage of botulinum toxin, also more commonly referred to as Botox®, a type of toxic bacterium that may be injected near the vocal cords. Botox® temporarily paralyzes the muscles near the injection area and can cause vocal outbursts to be quieter, but does not generally reduce their prevalence. Some people may find an increased frequency in uncontrollable speech when they are experiencing high levels of stress; therefore, some patients may find working with a therapist to learn stress reduction exercises helps lessen the severity of the condition.