- Tourettes Syndrome -
Hope For Understanding (Danny's story)

  Could it really be Tourettes syndrome?

 Like any 9 year old, Danny did spend a lot of time stomping around and fighting with his little sister .... but Tourettes syndrome?

Sure, he was constantly forgetting to pick up all his toys, but all in all he really was a great little kid.

 Danny was diagnosed with (ADHD) attention deficit hyperactivity disorder when he was in the first grade.

He had some trouble focusing in class and sometimes his teacher had to scold him for talking when he shouldn't be.

Still, he was a typically happy, and a very active and bright little 9-year-old boy, who loved lizards, Spiderman and big trucks.


Skip ahead to Tourettes Symptoms


 However, shortly after Danny's 9th birthday, he became prone to sudden loud outbursts and movements that would shake his entire body. At their worst, they would include sudden loud shouting, words that seemed to come out of nowhere and had little to do with what he was doing or his current situation.

-Frustrated and terrified, my husband and I took him to doctor after doctor, searching for some answers. Even more frustrating was the fact that Danny's symptoms seemed to go away whenever we were at the doctors' office.

 Finally, our family doctor referred us to a neurologist who finally gave a name to his odd behaviors.

   -Our Danny did indeed have Tourettes syndrome.

 And so began our journey of discovery as Danny's parents, at first extremely frightened, and then saddened by our son's diagnosis.

We began to research the condition, learning more about the mysterious disorder and gaining a better understanding, of not only Tourettes syndrome itself, but of our son Danny along the way.

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    What is Tourettes Syndrome?

 Turrets, TS, Tourettes disorder and the most common, Tourettes Syndome, got its name from Dr. Georges Gilles de la Tourette, a French neurologist who first described the condition in 1885.

-It is a neurological disorder characterized by the presence of 2 or more motor "tics" and at least 1 vocal tic, (Involuntary movements or sounds) occurring for one year or more.

-Tourettes affects children of all ethnic groups, but boys are affected 3 to 4 times more often than are girls. Many cases of Tourettes in children go completely undetected.

-Tourettes was once considered to be a rare condition, but it is much more common than once believed, due in part to the lack of diagnosis in many cases.

-The symptoms of Tourettes syndrome typically appear in childhood, between the ages of 8 and 12, when tics are also the most severe.

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    Tourettes Syndrome Symptoms

 There are three types of symptoms of Tourettes syndrome: motor, vocal and behavioral. "Tics" are usually the primary manifestation of motor and vocal symptoms.

 -The earliest symptoms of Tourettes usually involve the face.

 Facial grimaces, blinking the eyes, moving the head and neck or limbs in peculiar ways (Motor tics) and at least one vocal tic, which can consist of humming, grunting, whistling, or sometimes as in Danny's case, even shouting.

-Motor Tics (2 or more) Eye twitches, or other simple motor tics involve brief muscle contractions that occur in one or more limited muscle groups. Complex motor tics, on the other hand, are more complicated, involving several muscle groups and appear purposeful.

 Examples may be jumping, foot stomping, stretching or unnecessarily touching others excessively, and continuing any of these actions.

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-Vocal Tics (1) humming, grunting, whistling, Simple vocal tics, abnormal emphasis on a part of a word or phrase and inarticulate noises (constant throat clearing, high pitched sounds or grunting) are a manifestation of motor tics, but require the use of muscles that produce vocalizations.

-Complex vocal tics are probably the best known, although not the most prevalent. A strange urge, known as Coprolalia (ko-proo'lay-leea) is the involuntary expression of obscene words or phrases, and is fairly well known.

 Coprolalia is often mistakenly thought of as synonymous with Tourettes, but actually only affects about 10% of those with Tourettes disorder. Most of the stigma attached to Tourettes originates from Coprolalia.

-We were eternally grateful Danny didn't have Coprolalia, but his sporadic shouting, (though not obscene) could still be very embarrassing on family outings, and more importantly, very humiliating for him.

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-Other complex vocal tics, Palilalia and Echolalia, involve the involuntary echoing of the last word, phrase, sound or sentence spoken.

 In the case of Palilalia (pal'i-lay-leea), it is the repetition of ones own words, (may sound like stuttering) and in Echolalia (echo'lay-leea), it is the sounds or speech of others that are repeated.



-These can also be symptoms found in Aspergers syndrome and in Autism.

 In very rare cases of Tourettes disorder, the person may display behaviors that inflict harm to themselves, such as banging their heads or biting of their own cheeks and lips.


    Can Tourettes Tics Be Stopped?

 Once a person realizes that they have the Tourettes disorder, suppression of the tics is possible, but usually only for short periods, as the urge just becomes too great. The numerous tics can be extremely hard to control, much like trying not to sneeze, to stifle a yawn or not to scratch an itch … try it sometime, it's tough.

-If the person is immersed in an activity (or during sleep) the tics occur much less frequently.

-These symptoms increase and alternately decrease in frequency, severity, location of the body and the type. No two individuals are the same and there is no "typical" case of Tourettes.

-Any form of stress can worsen any and all of the symptoms.

-The natural course of Tourettes varies from person to person and the symptoms can range from very mild to quite severe, but fortunately the majority of cases are on the mild side.

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  Many children have co-occurring problems with Tourettes such as:

-Attention deficit hyperactivity disorder (ADHD), where the child may become easily distracted and has difficulty concentrating. (like our Danny)

-Obsessive-compulsive disorder can also accompany Tourettes with its compulsive behavior of checking everything, doing things a set amount of times, washing up constantly and so on.

-Learning disabilities.

-Aggressive and disruptive behavioral difficulties.

-Trouble sleeping (which in turn worsens all symptoms)

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 As you can see, the addition of any of the behavioral components can be enough of a problem in themselves. Adding the tics to this can really increase the difficulties.

*A determination must be made, as to which problem is worse, and the best course of action to take with the appropriate therapy and/or medications.

-We concentrated on the ADHD first, as this was the first to appear. Fortunately for Danny, and for us, the ADHD was under control by the time his shouting started.


    What Causes Tourettes Syndrome?

 Doctors don't really know just what causes Tourettes syndrome. Most people who have been diagnosed with the condition are believed to have a gene that increases their risk of developing it.

In our case, it turned out my husband had Tourettes his whole life and didn't realize it until we brought Daniel in. All those years of clearing his throat and twitching his head and neck, turns out it was the Tourettes disorder all along.

-"Sporadic" Tourettes occurs when there is no apparent genetic link.

-Although Tourettes disorder is predominantly inherited, a specific gene has yet to be identified. Parents with Tourettes seem to have about a 50% chance of passing the condition to their children.

-The "gene" believed to be passed down from parent to child that causes Tourettes, can actually present as a milder, transient or chronic tic disorder (short or long duration), or as an obsessive-compulsive disorder (OCD), without tics.

-There are also certain environmental and physiological factors that seem to increase the risks, including external stress, emotional health and physical health problems.

-Regardless of the root cause, Tourette syndrome occurs because there is a disruption in the way that the brain uses or produces neurotransmitters.

-These neurotransmitters control how signals and impulses are sent along nerve cells. Dopamine and serotonin are believed to be the primary neurotransmitters affected by Tourettes syndrome.


    How is Tourettes Syndrome Diagnosed?

 Observing the individual for the signs and symptoms of Tourettes and evaluating the family history is the method used for diagnosing Tourettes syndrome.

-Multiple motor tics and at least one vocal tic must be present for a period of at least one year.

-There are no blood or lab tests that can diagnose Tourettes. The only tests that are given are to rule out other causes. There is no cure.

-The onset of Tourettes is during childhood. This also coincides with an age where many children are not always on their best behavior, and Tourettes syndrome can often be mistaken for just "clowning around" or other unruly "childlike" behavior.


 Danny often stomped around and was very loud as a kid, but he seemed normal to us (although very annoying) until it got out of hand. Because the vast majority of cases are mild, many cases are never even detected.



    Treatment for Tourettes Syndrome

 Fortunately, most people with Tourettes are completely normal in every other way. They are not affected intellectually, nor is their development impaired in any way. Most can learn to live with the disorder without any medications at all.

-Quite often the incidence of tics subside considerably once a diagnosis is made and an understanding of the disorder is explained. With the help and understanding of friends and loved ones, children (and adults) can often become quite adept at managing their tic symptoms.

 Daniel tries to make it outside or to the boys' room, if he feels the "urge" to shout, this helps him a lot. He's also joined various sports teams, on the advice of our therapist, and this gives him a tremendous outlet.

-The relaxing effects of exercise, meditation and yoga can also be of help as stress is known to be a contributing factor for the occurrence of tics.

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 Medications are available, neuroleptic drugs are sometimes used for help with tic symptoms, but the possible side effects are numerous and can be worse than the problem. Usually they are only used in severe cases, and even then with very small initial doses and with very close scrutiny.

-Psychotherapy may help some people, in coping with the social problems that can stem from a general lack of understanding by most people, of Tourettes syndrome.

 It may also help in avoiding the depression symptoms that could result from the social isolation caused by the embarrassment of the symptoms. It is, for the most part, a child's disorder, and other children can oftentimes be very cruel.

-In our case with Danny's symptoms, our doctor recommended a therapist versed in Tourettes disorder, and he helped Danny to accept the teasing he often had to endure, especially at the beginning.

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 Problems can be much worse when other conditions coexist along with Tourettes disorder. These conditions can be more impairing than the tics.

-Cognitive Behavioral Therapy is sometimes used when Obsessive-Compulsive Disorder (OCD) is a component of Tourettes.

 When Attention Deficit Hyperactivity Disorder (ADHD) co-occurs with Tourettes, stimulants (such as Focalin, Ritalin or Metadate) may be prescribed.


    Prognosis for the Future

 Again, most cases of Tourettes syndrome are mild, and often can go nearly undetected by other people. Most of the time treatment is not necessary, other than a thorough understanding of the condition.

-The condition is not contagious and a normal life span can be expected. Tourettes symptoms may last a lifetime but are not degenerative, nor is it ever life threatening.

 When other conditions co-exist with Tourettes, such as depression, anxiety, self-harming or personality disorders, obviously there can be much more cause for concern.

-The prognosis for Tourettes syndrome is very good; the severities of tics are generally at their highest when diagnosed, between the ages 8 and 12, with a steady decline through adolescence, when symptoms fade significantly and may disappear entirely.



    Hope for Understanding

 A child that is ridiculed harshly in school will have a much more difficult time, so that any form of help with accommodations for kids in schools would really be of significant value.

-This alone is so important, and could be of such help to so many children.

 In the current economy, this may not always be possible, but there is no excuse for the lack of education concerning Tourettes syndrome in our communities and schools.

-The support and understanding of friends, family and schoolmates is often all that is needed, even with more severe tics.

Danny's 13 years old now, and with this support, and a little outside help, he's come to terms with his occasional outbursts.


  -Danny's a very happy kid again! (but he still fights with his little sister)



-Education, understanding and compassion ....

The real "cure" for Tourettes Syndrome.


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