An Invitation from TSA-USA

TSA-USA ANNOUNCES
Fifth International Scientific Symposium for Medical and Scientific Professionals

SAVE THE DATE: JUNE 12- 13, 2009

As you may know since 1981 TSA has sponsored four
Iternational Scientific Symposia with the last one held in 2004 in Cleveland, Ohio
With this notice we are announcing officially the

FIFTH INTERNATIONAL SCIENTIFIC SYMPOSIUM ON TOURETTE SYNDROME
will be held in New York City on June 12- 13, 2009

Please share this information with interested physicians and research scientists in your community.

FOR MORE INFORMATION PLEASE CONTACT
Heather Cowley
Manager, Medical and Scientific Programs
42-40 Bell Boulevard, Suite 205
Bayside New York 11361
Tel: 718- 224-2999 X247 Fax: 718.279.9596
email: ts@tsa-usa.org

MESSAGE FROM:
Irena Shtemler
Executive Administrative Assistant
Tourette Syndrome Association, Inc.

Functional Behavior Assessment and Positive Behavioral Intervention Plan for Students with Tourette Syndrome

Another excellent plan to manage a child or even an adult with Tourette Syndrome in the school setting is to always provide a POSITIVE BEHAVIOR INTERVENTION PLAN (Conners, 2008) . The development of this kind of plan is in accordance with what we call the FBA or the Functional Behavioral Assessments. The law of IDEA in 2004 requires that an FBA be conducted and a positive behavior intervention plan be developed in times when a certain behavior of the student already interferes with learning. According to Susan Conners, an education specialist, an FBA (functional behavioral assessment) is the process of determining why an individual engages in challenging behaviors and how the behavior relates to the environment. Since IDEA provides very limited guidelines and little to no funding, organizations who handle people with Tourette Syndrome or perhaps the school themselves should provide their own FBA workbooks. Professionals who will develop the FBA should first consider the main purpose of the FBA which is to understand the function of a behavior in order to teach and promote effective strategies, techniques and alternatives as well as knowing when to consciously ignore the behavior. It is also important that once the FBA is developed, the contribution to it is not the role of a single professional. The contribution to the FBA should be a collective effort from parents/ students, guidance counselors, school psychologists, teachers, OT/ PT, speech therapists, paraprofessionals, music/ art/ PE teachers, school nurse, someone knowledgeable about Tourette Syndrome and professionals outside the school like doctors and other therapists. Usually we developed the (1) Functional Behavioral Assessment (FBA) of a Student with Tourette Syndrome, (2) Summary of the FBA Worksheets for a Student with Tourette Syndrome which is intended to be a summary of the information from all of the completed FBA
worksheets as the final step in focusing on which specific behaviors should be addressed
when writing the PBIP, and a (3) Positive Behavior Intervention Plan (PBIP) for a Student with Tourette Syndrome. It is also important to consider certain factors in the development of the FBA like who is present during the development, when the behavior occurred, where the behavior occurred, when not, where not, environmental clues present (smell, climate, peers, teachers, activities???), other specific clues and trigger elements. The main reason why we develop the FBA is to produce an excellent Positive Behavior Intervention Plan.

Conners even added that the platinum rule is WHAT CAN WE DO FOR THE CHILD PRIOR TO THE BEHAVIOR INSTEAD OF WHAT DO WE DO TO THE CHILD AFTER THE BEHAVIOR HAS OCCURRED.

SAMPLE WORKSHEETS developed by Susan Conners:

I. FUNCTIONAL BEHAVIORAL ASSESSMENT WORKSHEET FOR A STUDENT WITH TOURETTE SYNDROME

A. General Information
1. Student’s Name
2. Grade
3. Date
4. Name of Person accomplishing the worksheet
5. Position
B. Behaviors Observed (be specific, describe what the behavior looks like)
1. The specific behavior impeding learning is:
a. Off-task behavior
b. Refusal to work
c. Disinhibition
d. Out of seat frequently
e. Aggressive behaviors
f. Socially inappropriate behaviors with peers
g. Talking out in class
h. Disrespect
2. How often does the behavior occur?
3. Where does the behavior occur?
4. Where does the behavior not occur?
5. When does the behavior most frequently occur?
a. During completion of written work
b. In unstructured environments
c. Interacting with peers
d. During a specific task
e. When instructions were given
f. When tics are exacerbated
g. Working in groups
h. Testing situations
i. In noisy environments
6. From #s 2, 3, 4, 5, which of the following conclusions might you draw as to the possible reasons for the behaviors?

II. SUMMARY OF FUNCTIONAL BEHAVIORAL ASSESSMENT WORKSHEET FOR A STUDENT WITH TOURETTE SYNDROME

A.General Information
1. Student’s Name
2. Grade
3. Date
4. Name of person completing the worksheet
5. Position
B. Behaviors Observed
1. The specific behaviors impeding learning are? (target no more than 2 behaviors)
2. How often does the behavior occur?
3. Where does the behavior occur?
4. Where does the behavior NOT occur?
5. When does the behavior most frequently occur?
6. From 2,3,4 & 5 which of the following conclusions might you draw as to the possible reasons for the behaviors?
C. Strategies/ Support to be implemented
D. What positive interventions can be implemented by the staff to assist the student in maintaining positive behavior?

III. POSITIVE BEHAVIOR INTERVENTION PLAN FOR A STUDENT WITH TOURETTE SYNDROME
A. General information
1. Name of student
2. Grade
3. Date
4. Person accomplishing the worksheet
5. Position
B. Behaviors targeted (enumerate)
C. Behavioral supports to be implemented by staffs (enumerate)
D. Environmental changes to be implemented by staff (enumerate)
E. Positive reward to be given to students for progress in PBIP
F. Communication plan
1. Who will coordinate the PBIP?
2. What is the date of the next PBIP meeting?
3. Has every teacher/ staff member working in the PBIP signed the worksheet?
4. Have the students and parents been informed of the strategies?
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Reference: Functional Behavioral Assessment and Positive Intervention Plan By Susan Conners

Registration

2nd Campus Tour Exposure: Tourette Syndrome

2ND EXPOSURE LOCATION: MOVEMENT DISORDER CENTER, ST. LUKES MEDICAL CENTER, JUNE 07 '08

CAMPUS TOUR: 2ND EXPOSURE

UPDATED: The exact venue of the forum on June 7 Sat is at Movement Disorder Center 4th Floor, Annex III St. Lukes Medical Center, forum will start at exactly 9 am. Thank you!

Greetings to everybody!

I am inviting everyone to come and join us in our 2nd of the Campus Tour series of the Philippine Tourette Syndrome Association at St. Lukes Medical Center on June7, Saturday, 9:00 am. There will be presentations regarding the profile of the organization, presentation on Tourette Syndrome as a disorder, there will be workshops for individuals diagnosed with TS as they will be interviewed and assessed for profiling of individuals diagnosed with the disorder in the Philippines. And there will also be group gathering for sharing. Lunch will be served. This event holds a registration fee of only 150 pesos.

For those who are interested to be members of the organization, you can download the forms, fill it up and return it back via email. Please note that this will not be processed unless your payment is recieved. We offer two kinds of memberships. Individual membership fee is 150 pesos and we also have a Family membership fee for only 300. When payment and accomplished forms are recieved,we will send you your Membership ID card via post mail. Discounts and Freebies will be given to members for future activities.

We look forward to see you at the venue.

1st Campus Tour Exposure: Sunday Forum

This was the first of the campus tour project of the Philippine Tourette Syndrome Association. It was held in a private residential house in Quezon City. Mr. Marlon Barnuevo (co-founder, vice president) presented the organization profile and Ms. Rowena Balmores- Victorino (co-founder, president) presented a short review about Tourette Syndrome as a disorder. There were parents, children, adolescents and adults diagnosed with the disorder, there were also other lay persons who were interested to join the forum. Registrations were also held at the venue to formally make those who were present members of the organizations. Interactions among the members were given time to share their life experiences and struggles with TS. A few group snapshots and a tastefull snack completed the event.

PTSA Announcement

The Philippine Tourette Syndrome Association will hold its meeting on MAY 18, 3:00 PM at a private residential venue. Everybody is encouraged to join! To know the venue, please text 0906.4960921 This will be the chance for you to register to be able to join the organization. Meet other individuals diagnosed and their family and friends. Come join us on Sunday...it'll be worth it! We'll see you!

Tourette Syndrome on IWitness: "May T.S. Kami"

Tourette Syndrome on Emergency

Tourette Syndrome on RXMen

Sources of Impairment for TS Individuals

It is very difficult for the individual to be understood most of the time because of behaviors they are not intending to do but causes trouble in most cases. Because of this, the family needs to be educated and needs to provide further support and understanding for individuals who are afflicted with the disorder.

For individuals who are diagnosed with TS plus Associated Behavioral Problems specifically ADHD, poor impulse control, inattention, and explosive behavior are common problems. For poor impulse control the common behaviors are social failure, disruptive and aggression. Because of this, in some cases, individuals who are manifesting these specific behaviors are casted as "troublemakers". For inattention problems, school failure is a common scenario. Finally, in explosive behaviors, the family is definitely strained. And according to Dr. Scahill, this is most common in the home rather than in school.

For individuals diagnosed with TS plus Obsessive- Compulsive Disorder or symptoms of OCD, anxiety comes in. More often that not, there's social failure because they tend to avoid social interactions or engagements. They also become disruptive if prevented from doing the ritualized behavior. NAGGING them will not do any good. Inattention is also common for individuals with TS+OCD which can lead to school failure because they are often distracted by worries and rituals. And finally, explosive behavior problems are also evident.

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Reference: Scahill, 2008

Updates on Tourette Syndrome, 2008 Data

At this point, information from different mediums have already made it clear that Tourette Syndrome is a neurological disorder characterized by motor and vocal tics. As a review, it is very evident that the disorder displays a pattern of many different motor and phonic symptoms. But at this point, it is of utmost importance to understand that there is no diagnostic tests for TS. Effective diagnosis is based on HISTORY and OBSERVATION. For parents or guardians especially the individual himself, history and observation are two very important considerations. Tracking back the symptoms and observing its frequency and severity will make it easier for the doctor to diagnose the disorder. According to Dr. Scahill, you need to:

LISTEN

WATCH

LISTEN

Another important point is that "swearing is not required for diagnosis". The prevalence of TS is influenced by diagnostic threshold. Moreover, moderate to severe TS affects 1 to 6 per 1000 in school- age children. The onset of the disorder is again in childhood with motor tics coming in before the vocal symptoms specifically 5-7 years and 7-9 years respectively. By age 10, the urge to initiate the movement is already very evident, this is what we also call the premonitory sensations. Individuals with TS can suppress the tics, however, only up to a limited degree. It is also expected that tics tend to decline with age. If it doesn't, there needs to be a lifestyle check and again the importance of history and observation comes to the picture.

It is already proven that Tourette Syndrome can really debilitate the person. The impairment is dependent on the classification of the disorder meaning whether it be mild, moderate or severe. If mild, you can expect minimal interference. But if the disorder is classified as moderate or severe it may already be bothersome because of the urge, the suppressing tics and frustration. It may also interfere with daily activities which can also be a reason for their frustration. And it may already be noticeable which causes some teasing, bullying, and in most severe cases--social isolation.

TS IS NOT JUST TICS. Individuals diagnosed with the disorder may also exhibit impulsiveness, distractibility, hyperactivity, oppositional and defiant behavior, repetitive behaviors, low frustration tolerance and explosive outbursts, anxiety and depressed mood and learning problems.

In the clinical picture:

50%- 66% of children with TS have ADHD

50% have Obsessive- Compulsive symptoms

30% have Obsessive- Compulsive Disorder

It follows that if the individual is diagnosed with Tourette Syndrome plus any of the two co-morbidity (OCD or ADHD), the impairment is GREATER.

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The article above was written by the author based on the presentation made by Lawrence Scahill, MSN,Ph.D. in the TSA National Conference in USA, 2008 entitled "Tourette Syndrome Workshop: Parent Training"

Update on the TSA National Conference in USA

As part of the update of the previous TSA National Conference held in USA, the ff. are the presentations of the speakers:

• Behavioral Sciences Consortium: A TSA Success Story
• Latest Treatments and Related Issues for Tourette Syndrome and Co- Morbid Disorders
• Impulse Control and Anger Issues of Children, Adolescents and Adults with TS
• Aggressive Symptoms in Children with Tourette Syndrome
• Aggressive Symptoms in Adults with Tourette Syndrome
• Behavioral Treatment for Tics

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TSA-USA.ORG

IWitness Shooting on Tourette Syndrome Documentary

WATCH US ON I-WITNESS

The organization has recently been busy shooting for the documentary episode of I- witness on channel 7. This has been a major publicity for the organization. Aside form that, we will be able to reach millions of people in letting them know the existence of Tourette Syndrome in the Philippines and that there is actually an organization which can help them undergo the necessary steps and information about Tourette Syndrome.

So please help us advocate for Tourette Syndrome, watch us on I-Witness on May 5, Monday after Saksi on Channel 7 for a documentary on Tourette Syndrome.

FOUNDERS

MARIA ROWENA BALMORES- VICTORINO, M.Ed., RN, BSN, CRN

Weng as everybody calls her, is one of the founders of the Philippine Tourette Syndrome Association. She had been doing formal research about Tourette Syndrome even before her interest in forming the organization. She is a registered nurse by profession with hemodialysis as specialization and currently working in a US Dialysis Company in the Philippines. She graduated her Bachelor of Science in Nursing in the University of Santo Tomas in 1999, took her Masters Degree in Education in the University of the Philippines and graduated in 2008.

Weng's interest to form the organization started when symptoms of TS had been observed from a family member. Emphatizing with the difficulty that a person with TS has to face in everyday of his life, Weng saw the need to make people aware of the disorder. Hence, eversince the formation of the organization, Weng hasn't stop working on her advocacy for Tourette Syndrome in the Philippines. She continued to talk about it in seminars, proposed TS to be exposed in media and worked all the way thru developing materials for information dissemination. Truly this has been a very remarkable experience for somebody whose caring profession as a registered nurse had been stretched out for a lifetime community service for people with Tourette Syndrome.



MARLON BARNUEVO


Marlon is the co- founder of the organization. He earned his bachelor's degree in Industrial Design from DLSU- College of St. Benilde in 2000. Armed with nothing but a student's design portfolio, he landed on his first job as designer at Duane Quintal Associates, where he had the rare opportunity of working with one of the Philippine's pioneer in the ID profession and renowned Corporate Identity Designer, the late Duane Quintal Sr. He was eventually promoted as Senior Designer until his resignation in 2004, when he decided to pursue a career in music with his band, 3rd Avenue.

Marlon's interest in taking part of the formation of the organization is basically rooted from the fact that TS had been his companion for the longest time. Although he had a lot of difficulties with the disorder, this hadn't stopped him from pursuing what he liked best----music. In fact, he had become the icon of the organization for success and been inspiring children with TS to be functional individuals and be successful in all of their endeavors in life.

PHILIPPINE TOURETTE SYNDROME ASSOCIATION: Our Mission

The zealous pursuit of the vision is through PTSA’s allegiance to continuously:
•Muster small and large sectors of support for the PWTS;
•Foster the PWTS in all aspects of their development to become not only functional individuals but also functional individuals in society
•Carry out seminars and workshops on updated information on Tourette Syndrome especially program development and treatment/ management of the disorder from different disciplines (medicine, education, counseling, psychology) including teaching strategies and parenting
•Bridge the gap of different disciplines (medicine, education, counseling and psychology) in order to develop and administer more appropriate and relevant programs specifically designed for PWTS
•Promote research on Tourette Syndrome in the Philippines from all disciplines (medicine, education, counseling and psychology)

PHILIPPINE TOURETTE SYNDROME ASSOCIATION: Our Vision

PTSA shall always be a leader in advocating the PWTS, their families and significant others to fully understand Tourette Syndrome as a disorder and be able to give them opportunities and help them achieve their optimum development to function not only as individuals but individuals in the society.

PHILIPPINE TOURETTE SYNDROME ASSOCIATION: What is PTSA?

The Philippine Tourette Syndrome Association (PTSA) is the first and only non-profit, non- stock organization about Tourette Syndrome based in the Philippines. It is an association of (1) professionals from the field of medicine, counseling, education and psychology and (2) lay persons particularly the individuals diagnosed with the disorder, their parents, relatives and significant others.
Originally organized in February 16, 2007 as a “Tourette Syndrome Core Group” and registered with the Securities and Exchange Commission on April, 2008 as Philippine Tourette Syndrome Association (PTSA). The organization was made because of a common goal to address the specific needs of the” Persons with Tourette Syndrome “ (PWTS) and be able to help them recognize their inherent capabilities in coping with the disorder better and develop their full potentials to become successful individuals in their own little way.
PTSA recognizes the significance of nurturing this special group as part of the Philippine’s society noting that many Filipinos are unaware of the existence of the disorder in the country. Furthermore, misconceptions about the disorder are a frequent occurrence. With PTSA’s efforts to disseminate information about the disorder will enable replacement of those misconceptions with reliable facts from the most recent literature on Tourette Syndrome not only from the Philippines but from resources all over the world.
PTSA as an organization is powered by its human workforce of professional experts with a wide array of experiences in various disciplines that are needed to suit the needs of the PWTS. This workforce makes the organization dynamic as it is multi-faceted in nature.

Group Dynamics as Intervention for Filipinos Diagnosed with Tourette Syndrome

This research had been presented in the 1st Philippine Graduate Conference in Education at the UP College of Education last March 07, 2009.


ABSTRACT OF THE RESEARCH

Unusual blinking of the eye, peculiar hand movements, sound repetitions, word echoing are just some of the symptoms associated with Tourette Syndrome (TS). With different manifestations, people who are diagnosed with the disorder are often ridiculed simply because the public’s lack of knowledge regarding the disorder.

Tourette Syndrome is a neurological disorder characterized by neurological tics which are often physical and verbal. The attacks are even so transient that after the occurrence of a tic or tics, the person can go back to his or her usual business. Symptoms of Tourette's are tics like sniffing, coughing, humming, whistling, throat clearing, shoulder shrugging, eye blinking, and neck stretching. The onset of the disorder usually begins in childhood at age between 7- 10. The occurrence of symptoms usually begins on the face called facial tics and if the symptoms worsen may progress down to the lower body. Symptoms usually intensify during teenage years and diminish in late adolescence or early adulthood. Patients may also develop co-occurring behavioral disorders, namely obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD) or attention deficit disorder (ADD), poor impulse control, and/or sleep disorders.

The study is a quasi- experimental research with the use of a one-group-pretest- posttest design. With the use of group counseling as an aspect of group dynamics, this paper specifically explored the underlying issues, problems or concerns of a person with Tourette Syndrome to help the person cope with the disorder. Consequently, this paper also intended to document the possible beneficial effects of group counseling for the medical clientele.

This study involved five Filipino male respondents suffering from Tourette Syndrome, all in the prime of their lives, age ranging from 19 to 28. One of them has a co-morbid disorder and one was medicating at the time of the study. Two of the respondents have severe form of the disorder exhibiting behavior such as coughing, itching, head jerking, barking, kicking, arm folding, knee bumping, teeth sucking and eye poking. All five suffer from the Tourette Syndrome’s physiological symptom (tic), behavioral (loss of self-esteem, irritability, aggression and lack of concentration) and psychosocial (inability to interact, anxiety, depression, social stigma and social isolation).

Different counseling needs of the five respondents were discovered such as health concerns, anxiety for not finishing their studies, wariness about their future employment, inability to perform household and social responsibilities and concern over non-acceptance by peers. Specific counseling needs akin to an individual were also identified.

The five respondents underwent a series of group counseling sessions. A comparison of their pre- and post-test average scores on the Tourette Syndrome Symptom Assessment Scale (TSSAS) revealed a significant decrease of the symptoms after the group counseling sessions, except for the physiological (tics), which remained constant even after the group counseling. Highest percentage decrease was registered on depression (-40%), social isolation (-35.48%), aggression (-31.03%), irritability (-30.55%) and anxiety (-27.77%). The lowest percentage decrease even after the group counseling was on self-esteem (-10.71%) and interaction (-16.36%), probably indicating that the respondents’ self-esteem was so low as a result of the Tourette Syndrome. The significant effect, however, of group counseling as manifested in the percentage decrease of the symptoms after the intervention reveals that group counseling as an intervention among individuals suffering from the disorder really works.

T-test analysis revealed that there is no significant difference between physiological and psychosocial symptoms of Tourette Syndrome and group counseling. However, this study found a significant difference between behavioral symptoms and Group Counseling.This study validates the finding of earlier studies that group counseling is an effective intervention strategy in order to alleviate the condition of individuals suffering from Tourette syndrome. This study may spark other studies on Tourette syndrome aimed at creating a knowledge base for better understanding of the disorder. This may prove beneficial not only to individuals with Tourette syndrome and their families but also to medical doctors, psychiatrists, neuropsychologists, educators, and counselors who have been caregivers of individuals with Tourette syndrome.

In a general sense, group counseling may be regarded as an effective intervention strategy for individuals diagnosed with Tourette syndrome. The bottom line is the understanding that society has on individuals with Tourette syndrome. It is important for medical doctors, psychologists and guidance counselors to make an advocacy for the general society to understand the situation of these individuals. Understanding each one of them heightens the understanding of using group counseling as an effective intervention for individuals diagnosed with Tourette syndrome.

This researcher suggests peer education programs to be spearheaded by counselors in different settings as these kinds of programs may prevent occurrence of bullying and teasing which are very common among individuals with Tourette syndrome.

In addition, it is suggested that further research in industrial setting be conducted aimed at assisting industrial counselors explore the issues underlying the disorder and how these factors affect individuals with the syndrome in the work place and their relationships with co-workers in order to improve working skills and relationships.

Finally, this research suggests the possibility to include the study of Tourette Syndrome and other special groups in the discipline of Counselor Education aimed at widening and enriching the perspective of the discipline, which may bridge counselor education with other disciplines such as Psychology and Medicine and other medical allied professions.
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AUTHOR: Maria Rowena Balmores- Victorino, M.Ed.,RN, CRNC

Neurofeedback and Tourette Syndrome

Understanding Brainwaves: The origin of all our emotions, thoughts and behaviors are the complex networks of communication among billions of neurons in our brains. The communication brought up by the patterns produced by these neurons, manifested by rhythm or pulse, is measured by what we call BRAINWAVES. Brainwaves are tiny pulses of electricity produced whenever one neuron communicates with the other. It actually results from what you are doing from moment to moment. The slowest brain waves are the delta waves, we experience this during sleep. Beta3, on the hand, is for our highest levels of concentration. Neurofeedback’s goal is to teach you to recognize and use your calm (SMR) waves and your thinker (BETA) waves. By using the computer monitor to watch your brain wave activity you can train yourself to stay out of the Theta and Alpha levels. This means that a single defect in the patterns of communication within the brain causes problems considerably. This happens when, say for example, you feel very anxious and you feel that their are reactions which occurs in your body such as stomach ache, nausea, headache and others, your brain has elicit within itself a pattern resulting in these symptoms. And these patterns can result from very diverse possible stressors. In an individual with Tourette syndrome, it has been reiterated in the other articles on this site that the brain electrical activity is defective; Dr. Mink even described it to be somewhat “buggy”.

BAND HERTZ MS
Delta 0.0-4.0 1000
Theta 4.0-8.0 1000
Alpha 8.0-13.0 500
SMR 13.0-15.0 500
Beta 15.0-18.0 250
Beta2 18.0-24.0 125
Beta3 24.0-32.0 125


How Neurofeedback Works: If the brain is not functioning at its finest, our body manifests a variety of physical or mental problems. Furthermore, cognitive, behavioral, psychological and other bodily issues can also be traced back from a poorly functioning brain. What neurofeedback does is that it trains the brain to improve its function, much like when you exercise to maintain fitness. It is a technique to train the brain to normalize functions of the body and mind.

One of the technique’s strong points is that it obtains upon the brain’s ability to learn and adapt. It actually deals with the problems at its core, it is non-invasive and the effects are lasting and permanent.

Since the therapy teaches the brain to operate effectively, the treatment is not only limited to recovering injury or coping with problems but helping the brain to get back on track so we can perform our daily activities. In fact, it can also be useful to facilitate peak performance like for example activities of an athlete or somebody who holds a corporate executive position.

The Procedure: Like all other therapies, it begins with an intake interview to know more about the condition of the person, the existing symptoms, the onset, the background etc. An EEG (electroencephalogram) is used to record all abnormalities produced in the pattern of brain waves. The waves will be used to identify certain frequency bands as areas for improvement. This will then be appraised as to what degree the symptoms may be resolved using neurofeedback therapy.

It is very important for you to know that the procedure is completely painless. There will just be EEG sensors attached to the scalp. These sensors are attached to an amplifier and a computer monitor to process the signal and provide appropriate feedback. It is also very important for you to know that the sensors do not do anything to your scalp or your brain for that matter, these are “read-only” sensors that permits transfer of the signals made by your brain to the computer just so feedback can happen. The training which occurs during the procedure can be in a form of a game, a video, auditory signals, or a combination of these modes. When the brain frequency show the normal brain pattern the person is rewarded by receiving points in the game or receiving auditory cues. Consequently, when the brain produced undesirable brain patterns, the person will have no points in the game or no auditory cues. What happens is that the brain learns to produce new and healthy patterns and eventually adapts and uses the desirable pattern.

The therapy has no known side effects. Depending on your choice, this kind of therapy is often coupled with medications and other therapies of your choice. Neurofeedback therapy usually lasts for about 40 minutes to 1 hour. The number of session depends from individual to individual and depends on the severity of the problem, but 40 sessions is the general guidelines. You can already see a considerable improvement within 15 sessions.
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This article was written for the purpose of education and not to endorse a particular therapy regimen.

Your Diet and Tourette Syndrome

Many of us have been wondering what could possibly be the correct diet regimen for people who have Tourette Syndrome. For people who are very meticulous with what they eat, they also sometimes wonder whether certain ingredients affect the production of tics in individuals with Tourette Syndrome. Unfortunately, this is where all the complications come in.

It is universally accepted that if we eat healthy then good health will follow.
Same concept lies in consuming foods containing too much fat which can lead to high levels of cholesterol in the body which can eventually lead to heart disease. But then again the question still remains whether there are some foods that lead to the symptoms present in an individual with Tourette Syndrome.

One needs to understand that the symptoms of Tourette Syndrome wax and wane during the course of the illness. This means that there are times when the symptoms are less and there are also times when the symptoms are at their peak. In connecting these to the diet of the person, you will really come to terms when you might be questioning your own nutrition that may lead to the changes in symptoms. Another thing is whether there are certain cyclical events that can also lead to having the symptoms of the disorder. One example is a woman’s menstrual cycle. According to Dr. Gerald Erenberg, the medical advisory board of the Tourette Syndrome Clinic at Cleveland, there are actually two theories that explains the relation of nutrition with the symptoms of Tourette syndrome.

“…that certain components in food lead to the symptoms, acting in that individual like a toxin or poison, and two, that the symp­toms are due to food allergies.”

There were a variety of foods that have been regarded as possible crooks in leading to tics or that of ADHD. The first report on this was documented by Dr. Feingold. He said that SUGAR and ARTIFICIAL INGREDIENTS cause the problems. Because of this discovery, Dr. Feingold came up with a diet called the FEINGOLD DIET. Many people found this to be true and felt that this is the nutritional answer to what causes Tourette Syndrome and ADHD. Eventually, other food groups have also been suggested that may cause these disorders. These foods are GLUTEN and DAIRY PRODUCTS.

Considering those food groups, it is an important note that the effect of these foods may not be the same for each individual. Others may find these effective, and others may not. Consequently, foods containing these ingredients may cause problems with an individual, but not with the other. The diet will now be a combination diet restricting all of the suspected ingredients. But still, this is an impossible diet to follow since most of us especially children consume some of these ingredients almost everyday. Taking for example, a 7 year old child diagnosed with Tourette syndrome who, in most cases, would take his daily dose of milk.

The second theory entails that any person can be allergic to any foods. Dr. Erenderg said that the allergic reaction shows up as tics and behavioral problems rather than the usual allergic reactions such as itching, bloating, hot flushes, rashes, etc. When we think that the person is allergic to certain kinds of foods, we subject the person to tests and put on an elimination diet to see what foods cause the increase in tics. For most people, this is a very challenging undertaking especially if the foods that were supposed to be eliminated are our favorite foods. And also because of the fact that the reliability of the tests used to diagnose food allergies are being questioned by the doctors themselves.

The facts mentioned above plus the oscillating symptoms of the disorder makes it even more complicated, complicating the question whether the increase in tics is due to cause and effect or just because of the standard course of the illness. This concept also applies in pharmacotherapy or the use of medications to manage symptoms of Tourette Symptom. The question also lies whether the tics are managed because of the effects of medication or just because of the waxing and waning of the symptoms of the disorder.

So what should you do then? Well, there is no definite answer as to what foods to avoid. It’s just keeping track on what you eat and finding out if these foods actually lessen your tics. It is often advised to keep a food diary. In this way, you will be monitoring the effects of the foods you consume on your tics so that the actual effects of these foods will be more concrete rather than just assuming that certain foods actually cause the tics. It is better if you do this yourself rather than just relying on hearsays.

Now, I think most of the people diagnosed have been taking supplements to aid them in controlling the symptoms of Tourette syndrome. Here’s the deal about supplements available today. While there have been many anectodal reports saying the efficiency of these supplements in the treatment and/ or management of Tourette Syndrome, the predicament of these supplements lies on which one to take because makers of these products claim that their products are more effective than others. Some of these supplements are the vitamins, minerals, enzymes, products from organic sources (grape seed extract, blue green algae, omega-3 oil) and other herbal products. Oftentimes we are more enthusiastic if these supplements are based on some proven scientific studies. But unfortunately, there are not enough studies to lead us to these supplements reliability. One thing you need to look for if it is approved by BFAD (Bureau of Food and Drugs in the Philippines) in the Philippines or FDA (Food and Drug Administration) in the US or its counterpart in your country for the products’ effectiveness and safety. Because some of these supplements especially herbal products contains potentially dangerous contaminants. And oftentimes, the efficiency of these products vary from supplier to supplier or varies within different batches of the same supplier.

All of these information should lead us to be very smart consumers. And we should also keep in mind that TOURETTE SYNDROME HAS NO CURE. All the products available to treat or manage the disorder provide the purpose of controlling the tics just so the individual will not have a hard time. It is also an important note to keep in mind that the tics wax and wane during the course of the illness. The thing is, take in what works best for you. I would also like you to remember that the PROGNOSIS IS GENERALLY GOOD...BUT THE NEUROBEHAVIORAL PROBLEMS MAY PERSIST AND CAN DEBILITATE THE PERSON MORE THAN THE TICS THEMSELVES. We may be more focused on the tics of the person that we forget the person behind the disorder who is first and foremost an individual before becoming an individual with Tourette Syndrome.

See the convential treatment for Tourette Syndrome
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This article was written from a reference article by Dr. Gerald Erenberg entitled "Is There a Connection Between Nutrition and an Increase in TS Symptoms?"

Having Tics? Here's What You Need To Do

Having Tics? Here’s What You Need To Do


If you are experiencing tics (sudden, repetitive movements or sounds) most of your life or if you have observed that your child has been experiencing some form of uncontrollable movements which you cannot explain, DO NOT DISREGARD. At first we may think that the movements may just be mannerisms that they will overcome in the long run--think twice and address. It is always a better way not to disregard especially if the movements bother you or the person who has it.

Though, we may not conclude that you or somebody close to you is having Tourette Syndrome, here is the basis for it. Doctors actually use The Diagnostic and Statistical Manual of Mental Disorders for making the diagnosis. If you happen to fall on this criteria then you may have Tourette Syndrome.

DSM-IV Criteria for Tourette Syndrome:

• both multiple motor tics and one or more vocal tics must be present at
the same time, although not necessarily concurrently;
• the tics must occur many times a day (usually in bouts) nearly every
day or intermittently over more than 1 year, during which time there
must not have been a tic-free period of more than 3 consecutive months;
• the age at onset must be less than 18 years;
• the disturbance must not be due to the direct physiological effects of
a substance (e.g. stimulants) or a general medical condition (e.g.
Huntington's disease or postviral encephalitis).

Having said that, the DSM-IV is not the only tool for diagnosing the disorder, doctors may also ask for the history--- how you come to notice the tics especially the frequency and types of tics. Just to refresh your memory on what Tourette Syndrome is all about, please read “What You Need To Know About Tourette Syndrome”.

Now, you may be wondering what you will undergo having those kinds of repetitive movements. It is very important to visit the doctor as soon as you notice the tics. It is better to address everything as soon as possible rather than later. Be prepared for tons of questions. The doctor will definitely look at the family’s medical history, the person’s symptoms and other clues to make a diagnosis. However, there are no standard tests for TS. Oftentimes, the doctors may use imaging tests like computerized tomography scan (CT Scan), electroencephalograms (EEG’s), magnetic resonance imaging tests (MRIs) and blood tests to rule out other conditions that might have symptoms similar to Tourette Syndrome.

TOURETTE SYNDROME IS NOT A PSYCHIATRIC ILLNESS, for people who want to be finally diagnosed, please go directly to a NEUROLOGIST or a MOVEMENT DISORDER SPECIALIST. But do not be surprised if you will be referred to a psychiatrist or a psychologist, they will also help in addressing certain issues involved with TS. Oftentimes, these people work together to finally come up with a correct diagnosis and eventually help the person seek treatment.

Since Tourette Syndrome is a SPECTRUM DISORDER ( a combination of tics, attention deficit hyperactivity disorder, obsessive compulsive disorder and other neurobehavioral disorders) other symptoms that may last for a longer period of time needs to be taken into consideration especially if they interfere with the normal function of the individual. Upon diagnosis, it is also suggested that you come to a neuropsychologist or clinical psychologist who are experts in handling special population such as TS for a deeper evaluation. Why do you need to do this? This will help you understand more of the issues or problems associated with TS in the behavioral, psychological, and social aspect which according to some parents, are more debilitating than the tics themselves. Counseling or psychotherapy is also a big help since it is proven to be effective treatment modality in medical clientele such as TS individuals.

In order to help you or your loved one cope with TS, it is very important for you to;

· EDUCATE YOURSELF ABOUT TS. Read on articles, journals, books, newspapers, and other resources about Tourette Syndrome. In this way, you can also educate others as well especially those people who will be dealing with TS in the long run.
· KEEP A JOURNAL OF THE HISTORY OF YOUR DISORDER. Jotting down important situations in your life that may be relevant in identifying specific factors associated with your disorder may help you a lot.
· OBSERVE, MONITOR AND DOCUMENT YOUR TICS. Keeping track of your symptoms will help you see the progress of your disorder and find out specific treatments that may be effective during the course of your illness.
· GET INVOLVED. Since TS is just new in the Philippines, we will all find great comfort if we get to learn from each others experiences with TS and offer a helping hand.
· FIND EXTERNAL SUPPORT. Join organizations or support groups offering services for the people involved with TS. In the Philippines, you can join the Philippine Tourette Syndrome Association to know other Filipinos involved.
· STRENGTHEN FAMILY SUPPORT. If the family is intact in providing support for the individual with TS, the person can go a long way in coping with the disorder better.
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Reference: Kids Health Website, 2007
Tourette Syndrome Diagnostic Criteria, 2004

Very Thankful

As expected there were some major challenges in pursuing my research about Tourette Syndrome. The one that had a major impact on me was the process of validating the original scale that I did for Tourette Syndrome (Tourette Syndrome Symptom Assessment Scale). I had a few contacts for that in Manila which provided negative results. I was kind of pessimistic at first to reach out to those people who were really appropriate for this type of validation. The reason was that, there seems to be a little bit of that Pinoy mentality where people will make it harder for you in times when you needed them the most. Well, bitter sweet realities but all true. I even made all the necessary letters and attachments for the validation but these professionals really just put it to trash. But that did not stop me from pursuing these passion of continuing the research. I emailed a couple of other people I knew not only in the medical world but also in Psychology. In fact, I also considered foreign professionals for the validation. I even considered my father's dissertation adviser way back in the 80's in Cincinnatti. Well all in all, I got 50 emails sent to foreigners, and 4 others who were Filipinos. Unfortunately, most of the emails I sent were sent back to me...server problem, I guess. But some of them were kind enough to write back and tell me that they were not qualified for this specific task. After the holidays, though, I got two letters in my inbox from foreign neuropsychologists and psychiatrists who happened to be also professors in universities in the US. Luckily, they reviewed the scale and validated it together with the suggestions for the final copy of the assessment scale. I was really very thankful. More thankful, indeed, when another Filipino neurologist validated it and gave out a certification. So..well, I guess I just took this opportunity to thank my reviewers namely:


Maria Cristina Macrohon, MD,MPH
Neurologist
International Institute for Neurosciences
Adult Neurology



Ronald Ruff, PhD.
Neurologist and Rehabilitation Psychologist
Faculty at University of California (Department of Psychiatry)
and Stanford University (Division of Physical Medicine and
Rehabilitation)
[visit Dr. Ruff's website]

William Drew Gouvier, PhD
Professor
Department of Psychology
Louisian State University
[access Dr. Gouvier's vita]
[LSU page]