| Volume X, Issue 4 | December, 2003 |
TS Community
The program includes the following speakers who are all experts in their field:
Program Outline for Medical Conference -
Friday, May 14, 2004
The family conference day on Saturday, May 15 will include John Piacentini, Ph.D., Samuel Zinner, M.D., Harlan Gephart, M.D, and Brien Vlcek, M.D., who will all present the same topics as on the Friday session. However for the parent conference day there will be a generous 30 minute question and answer time following each speaker. We have found from past conferences that Q&A time is never enough so by allowing these generous timeframes everyone should get a turn at asking a question. A concurrent program for children with TS is also in the planning stages.
You will receive the brochure with the full conference details in the new year and we hope to have high numbers of pre-registrations. To help with budgeting, we would appreciate an email to Bernadette@thewittyfamily.com saying if you will be attending. Thank you!
Hello Everyone! Well the year is almost over and you are probably like me and think that it has flown by way too fast! On the chapter front we have had a very full and active year and are excited about the great programs planned for 2004.
To briefly showcase some of the highlights of 2003:
The TSA of Washington recently made its debut as a part of YADA days. YADA, which stands for Youth Awareness Disability Assemblies, is a disability education organization that brings together many advocates from a variety of disabilities to present in elementary schools. Over the course of two days, an entire school attends workshop sessions on each disability represented concluding with panel question and answer assemblies at the end of each day.
Although we've been assisting other disability groups at YADA days for quite a while, we had our first TS booth at Ridgecrest Elementary in Shoreline and then at Olympic View Elementary in Seattle this fall. At the TSA booth, the students first sat down and discussed what they know about TS. Some students talked about friends and family members who have TS, while a few even talked about tics they themselves have. Then they played a game that introduced them to some common tics and let them make up some of their own. Many of the staff contributed to the overall experience by participating in the discussions, and a few got up and ticced with the kids.
During the breaks, many staff members and other YADA volunteers inquired about TS. It seemed to be something they knew very little about and were genuinely interested and appreciative to be given the opportunity to learn more. The TSA volunteers were excited to be able to extend their education beyond the intended focus of the students and spread information about TS to a wider variety of people. One teacher approached a TSA volunteer and said that she had had a student come up to her after attending the TSA table and tell her that she thinks she has TS. Not only did our presence at YADA give the student the information to help her approach her teacher, but also supplied the teacher with added resources for how to support that student. Our efforts were definitely worthwhile.
YADA is entirely volunteer run and the TSA's presence is unique. Many of the other disabilities represented have been able to create workshop stations that are possible to be run by volunteers who have not lived with that particular disability. With TS, however, due to the complexities and varieties of its nature, we at the TSA recognize the importance and value of having a first hand account of TS (either someone with TS or someone with a very close friend or family member with TS). So we encourage you to volunteer! Each of the volunteers this time around all gave great reviews and had a blast! Thank youCathy Marinella, Roseanne Torgerson, Brad Hawkins, Fon Schrup, Lex Meyers and Jaime Biava for their assistance.
The next YADA events are at The Meridan School in Seattle (Wallingford area) on February 27 and Phantom Lake School in Bellevue March 11 & 12. Contact Bernadette Witty at 206-780-5361 or Bernadette@thewittyfamily.com if you are interested in helping out or if you would like a YADA day presentation at your child's elementary school (greater Seattle area.)
On October 17th and 18th, Brad Hawkins and I attended the You Are the Expert Conference in Wenatchee sponsored by PAVE (Parents Are Vital in Education). I found it especially gratifying that people no longer say, "Tourette Syndrome, what is that???"
Kimi Rabun of Tacoma was the first keynote speaker. Her theme "You Light Up Your Life!" was both hilarious and informational. As she pointed out, advocates and parents do forget to take care of ourselves and our sense of humor. She also presented two breakout sessions on the same subject. Ken Swarmer, second keynoter, spoke on counterbalancing parenting with laughter. Parents present certainly related to his presentation.
A highlight was a panel composed of three young people with severe disabilities. They shared their experiences "Growing Up in the System." What a revelation!
Other breakout sessions covered subjects such as Building Sibshops in Your Community, Living with ADHD, Coming of Age, DD Endowment Trust Funds, Coping with Harassment, Intimidation AND Bullying, Juvenile Suicide, Turning Learning Differences into Learning Strengths, Reason to Hope: Preventing School Violence by Creating Emotional Safety & Emotional Respect, No Child Left Behind Law, Bully-proofing Your Child, Stress Reduction, and last, Tourette Syndrome (presented by me).
Although several disabilities problems were presented, the difficulties have a commonality to all, such as transition to post-21, police lack of awareness concerning disabilities and the need for a working partnership of SCHOOL and PARENTS with a mutual respect for each party's area of expertise…! All of these are common needs and goals. I highly recommend that parents attend these conferences and that they also urge their child's educators to do so. PAVE offers scholarships to cover the expense.
Fon is the former President of our state chapter, and a long-time advocate in the schools for kids with TS.
Besides having a lot of fun, we raised $2000 for use on chapter activities. See the goals listed in the article above for an idea of where that money will be spent. It's not too late to make a direct donation to the chapter. Your check will enable us to continue moving forward as a chapter and help raise the awareness of TS in our state. Checks can be made out to TSA-WA and sent to 11316 20th Ave. NE, Seattle, WA 98125. All contributions are tax deductible. Please let us know if you'd like a receipt.
Thanks to all who made the bowl-a-thon a success this year...
| Individual Donors | ||
|---|---|---|
|
Patrick Friel Maureen Hogan arbara Zook Kay Hight Ben Zook Gordon Apker Bill Zook Gymagine Gymnastics Richard Hedges Jane Nicholls Irene & Sid Patten Alex Beechie Margy Kotick Leanne Gallison Marsha Hoffman Dennis Miyoshi Wayne Duncan Larry & Sylvia Slate Anita Lehmann Kountry Kritters Mimi Barberis Philip & Heidi Pintor Mary Barberis Deanna Leinweber Nancy Barberis Robin Foutch Jim & Cassie Fotheringham Denise Conrad |
Yvette & Ed Lehmann William Doloughan Grace Gould Chris Richardson Bill Maesner Angie Smith Jean Maesner Carrie Rider Don & Betty Thompson Tawnya Becker All City Escrow Kerrin & Robyn Doloughan Phil & Shirley Daniel Dave Smith Steve & Cindy Daniel & family Marc Folsom Ann Venables Marc & Brenda Bauman Jaralene Spring Eric & Leslie Adamietz Marjorie Jones Joseph Atwood Kathleeen Johnson Susan Gross D.T. Challinor Jan Davis Doug Musselman-Brown Harvest Moon |
Ned Dunn & Patty Carr Dolla Collisn Paul & Marci Armistead Joe Sanders Tim Higgins Jill Dayne Allison Nesmith Beth Tiffany Jim Biava M. McDowell Joanne Beck J. Foreman Steven Beck G. Burton Amy Beck J. Benson Randy Devoli Kerry Hauf Darold Harris Rick Schultz Larry & Bernadette Witty Ron Schultz R.G. Schultz Jan Schultz Claudia Peterson Casey Olson Ed Schild Char. Kelly |
Corporate Donors of Prizes
Michelle Petrilli - Mary Kay Cosmetics
Toys 'R Us
Fred Meyer
Spokane Forest Service
Red Hen Jewelry
Columbia Basin Knot Company
Microsoft
Plasteel Frame Company
...and a special thanks to Celeste Jalbert and Carole Jones in Seattle and Robyn Doloughan in Spokane who spearheaded this year's bowl-a-thon and contributed their time and energy into making it a success. Thank you so much!
Robert & Andrea Moawad
Steve & Wilma Childers
ARC of Kitsap & Jefferson Counties
Participants are needed in a new research study. It is being headed up by Rán Einarsdóttir, a doctoral candidate in the Division of Professional Psychology at the University of Northern Colorado, Greeley. He is conducting a research study examining the impact of TS on family life. He is seeking parents of children with TS who would be willing to discuss their family life in three one-hour long audiotaped interviews. Participants would be asked to fill out a couple of brief questionnaires prior to the interviews. Interviews would be scheduled at a convenient time and location.
Criteria for participation in the study are:
This October I attended an educational workshop on educational issues for students with Tourette Syndrome as the representative of our state chapter. The workshop was held at St. Joseph Hospital in Phoenix, Arizona. I attended the workshop to gain experience in how to facilitate teacher in-services in our area, and to train others to either present the same in-service material or to help with educational advocacy. Many educators are unfamiliar with TS and accommodations that can work in the classroom to make a better learning environment.
The course was lead by Susan Conners and Kathy Giordano from the National TSA. Susan is currently the national Tourette Syndrome Association's Education Specialist. Kathy Giordano is the Chair of the TSA Advocacy Committee and is widely known as an advocate for students for TS and a frequent presenter on Special Education advocacy. They host an "ask the experts" site on http://www.tsa-usa.org/ under the Education & Advocacy section, and are both authors of resource materials. There are many educational resources available at the national web site for educators and families.
A small group of representatives from various western states chapters attended to learn how to give in-service teacher seminars on an overview of TS, associated disabilities, and educational accommodations. Part of the workshop also focused on educational advocacy, and how parents and educators can work together to create accommodations for students with special learning needs.
The chapter goal is to develop a few members that would also like to be trained on these topics to create a network of support around the state to provide educator workshops and at times act as an educational advocate for the families. An example of teacher in-service needs would be if parents have asked, as part of their child's IEP, to have teachers and staff trained on TS and associated conditions. At that point the school would set up time where a workshop can take place. Those interested in learning more about being an in-service educational volunteer can email Cori at corih@hotmail.com, please put "TS" in the subject line.
For registration and scholarship information, call Chantell Jenkins-Yates at 718-224-2999 ext. 251, email c.jenkins-yates@tsa-usa.org, or register on-line at tsa-usa.org.
Editor's Note: We first met Anita & Carole's sons, Andrew and Ben, in an article published in the September 2002 issue of Connections. We continue to follow their story as they move on to another year of school.
Andrew's Story
Anita's son, Andrew, was in 8th grade last year and attended a public middle school in the Seattle School District. He had been in the public schools since the elementary grades. Andrew had a 504 plan with a number of accommodations such as help taking notes and getting assignments recorded, and allowing extra time for test taking and homework assignments. Although he was in the same school in 8th grade as he had been the previous two years, his last year of middle school did not turn out well. Over the course of the year, his tics escalated dramatically, particularly his vocal tics. These were very disruptive and annoying to his classmates. Often he needed to go home by 11am to take a break, and then would try to return to school in the afternoon. Kids who had been his friends in the past began to lose patience with him and he endured several humiliating incidents of bullying and taunting at school. By spring of the school year, Andrew needed to see his neurologist and psychologist on a weekly basis. His medication was increased which made him more exhausted. His neurologist finally limited him to one hour of homework a day which helped make him more productive.
Andrew's parents did not find much support within the school. They requested to come into the classroom to talk to Andrew's classmates, but the teachers refused. Although he had a 504 plan with accommodations which would have been very helpful, very few of them were carried out by the teachers, despite repeated requests done in writing by Andrew's psychologist.
Since Andrew was moving on to high school this year, his parents spent a lot of time carefully looking at their options. They visited all the public high schools in the district and looked at alternative programs. They met with all the counselors and nurses at the schools and discussed Andrew's specific situation and needs. They designated a first choice school based on their research and were disappointed although not surprised when he did not receive it since its geographical distance from his home gave him no priority for getting in. They were able to take advantage of a special appeals process available to children with 504 plans, however. They gathered documentation and letters of appeal from the school district, school principal, doctors, etc. They also brought Andrew's psychologist with them to the hearing. Fortunately, they won their appeal, and Andrew began high school at his first choice school this September.
So far he has had a good start. His teachers, staff and administration are extremely supportive and communicative. His tics had also subsided considerably until fairly recently (perhaps because of the lessened stress?). His parents are trying to give him the space to learn how to manage himself and his behaviors at school.
Lessons Learned
Andrew's parents learned a number of lessons throughout this trying year. They include:
Ben's Story
Ben had started a new private school in 6th grade. It quickly got off to a bad start, culminating in the school's request that Ben no longer attend. Unfortunately, the school was under no obligation to refund the full year's tuition that had been paid. After that chaotic year, Ben's parents decided to do something entirely different for 7th grade. They hired a full time tutor (a man who had previously been Ben's teacher) to work exclusively with him. They set up a classroom space outside his home and structured his day just as he would have it in a regular school with all the various subjects taught. This situation offered many advantages:
Overall, Ben's parents felt they had made the right decision. They removed him from the stress of having to function in a regular classroom at a time when his tics were at their worst. By removing a lot of the distractions, he was able to focus and make progress. He matured a great deal during the year.
This school year, Ben's parents decided to place him in his neighborhood public middle school for 8th grade. Ben was excited about being in a large school and a regular classroom, something he had never experienced. He was adamant about not telling other students about his TS, although his parents did alert the administration and teachers. Maturity and a stronge desire to fit in have caused Ben to make a big effort to behave appropriately. His tics have subsided a great deal from the past two years. He continues to see his tutor a couple nights a week for help with homework.
Because Ben had never attended a public school, he had no active IEP or 504 plan. Private testing which had previously been done is being used as a basis for establishing accommodations for him this year, although as of one quarter into the school year, there is not yet a plan in place.
Lessons Learned
Ben's parents say they wouldn't hesitate to remove a student from an unhappy and unsuccessful school environment to tap into the homeschool resources knowing how beneficial it turned out for Ben. There are lots of great homeschooling resources that can be helpful for students and parents going through a particularly difficult time with tics and behavior issues. Sometimes a few months or a year in a different environment can do a world of good.
Among the site's features:
Dr. Zinner is willing to take your questions regarding TS and co-morbidities and answer them in a future column. Please send any questions to the editor at TSAWASH@aol.com
This important question cannot be answered without first understanding the range of difficulties your child is encountering because of Tourette Syndrome (TS). Let's first take a look at an overview of TS and the kinds of struggles often experienced by children with TS.
Children with TS often endure significant hardship in the school environment. Problems related to tics and to "co-morbid" conditions can interfere with the learning process and with social acceptance.
Challenges with tics
For many children with TS, tics are often mild, and may cause little interference with a child's ability to perform an activity or to focus. For others, tics may be quite severe, and can disrupt the flow of behavior or speech. For example, a child who jerks her neck as a tic will have trouble following a teacher's instruction in the classroom each time she jerks. She will have trouble reading a book or writing a paper, because these activities may be continually interrupted with each jerk.
Other children may be more successful at suppressing their tics publicly, but in so doing, it may consume enormous amounts of energy and focus. This focus may come at the expense of paying close attention to the classroom activity.
Children with tics may be targets of ridicule by their peers and, sadly, by uninformed teachers. Teasing can be ongoing and very cruel, causing poor self-esteem, anxiety, anger and depression. These children are at risk of school failure and loneliness because of these psychosocial consequences.
Challenges with co-morbid conditions
But we must remember that most children with TS also have co-morbid conditions that are likely to be as, or more, interfering to them than are the tics. What are some of these co-morbid conditions, and how do they interfere? A list follows below, and we will discuss several of these conditions individually, emphasizing their roles in interfering with school performance.
Challenges with ADHD
About half of clinically referred children with TS also have Attention Deficit Hyperactivity Disorder (ADHD). This disorder is characterized by features of impulsive behavior (interrupting, acting without thinking), distractibility, hyper-attention (difficulty in focus on any one thing in particular because of attention being paid to many things at once), and hyperactivity (on the go, fidgety, restless). As can be seen, any of these features would wreak havoc in a quiet classroom setting. Children with ADHD often become social isolates or targets for teasing because of their disruptive behaviors and off-the-mark statements (they may miss the point in discussions because of failure to pay attention).
Challenges with Obsessive-Compulsive Disorder and symptoms
A third or more of children with TS will have Obsessive-Compulsive Disorder (OCD), and perhaps 9 out of 10 will have some obsessive-compulsive symptoms not severe enough to be called "disorder." Obsessions are unwanted thoughts that seem unreasonable, but won't go away unless acted upon. Compulsions are the behaviors that are performed to help to reduce or eliminate the obsessions. For example, a child with TS may have an obsessive thought that his hands are dirty, despite having just washed them with soap. He may wash his hands for minutes, or hours, at a time! No matter how long he washes, the hands still feel dirty to him, so he compulsively washes over and over again. It should be mentioned here that the distinction between a tic and a compulsion is not always clear. A child has a tic to reduce a physical feeling of discomfort or tension, and a child has a compulsion to reduce a cognitive feeling of discomfort or tension. There is some thought that Tourette Syndrome and Obsessive-Compulsive Disorder are one and the same disorder, but that they are manifested differently in different people.
Another example of an obsession may be that of a song that runs through one's head. We have all had the experience of an old or familiar song, running through our mind, and we may hum along. However, some children with OCD are unable to rid their mind of a song. It may be virtually impossible to pay attention to words on a page, or a test, because the song "plays" so loudly and with such interference in their head that they cannot "hear" or focus on what they're trying to study. They may feel forced to rehearse the entire song, losing valuable time.
Others may feel required to touch something (such as their head, their desk, their pencil) a certain number of times while performing some activity, such as writing. Imagine yourself trying to complete an essay, during which you are required to stop what you're doing every 10th word to tap your desk three times.
The possible examples are endless, but you can see how obsessions and compulsions might interfere.
Challenges with learning problems
Learning difficulties and disabilities are quite common in children with Tourette Syndrome. By legal definition, a child with a learning disability has a statistically significant difference between her cognitive potential (based on intelligence test results) and academic achievement (based on academic testing in areas such as mathematics, reading or writing). But there are many more children who have such differences, but not to a degree that the law recognizes. These children may be considered to have learning difficulties. There are also many children who have learning problems that simply are not tested in the standard battery of tests administered to determine learning disabilities.
In general, learning difficulties and disabilities are neurologically-based problems that prevent a child (or adult) from learning as well as he or she could. Their brain is not "wired" to allow them to use their intelligence for some kinds of skills as efficiently as we would like.
Challenges with sleep disorders
Sleep disturbances are relatively common in children with Tourette Syndrome. While there are many kinds of sleeping disorders (such as difficulty falling asleep, frequent arousals, or early awakening), the outcome for nearly all sleep disorders is inadequate sleep. The medical literature is full of evidence showing that children who don't sleep enough perform less well at school, behave more irritably, and are more likely to be anxious or depressed.
Challenges with medications
Ironically, medications that are used to treat some of these disorders may, in turn, create new problems. All medications have side effects, and some side effects may make it difficult for your child to perform some functions optimally. Some medications, for example, cause drowsiness. Others may cause irritability. Of course, a prescribing provider can help find a manageable balance in prescription when medications are used.
So what can a primary care provider do?
The most important first-step is to make an accurate diagnosis. The provider, the school and the family must consider the possible problems contributing to difficulties at school, and develop a list of priorities. First things first. Determine what is most interfering (to the child, in the classroom, to the family, etc.), and address this.
Each of the co-morbid conditions described above ought to be considered, and ruled in or ruled out, for every child with TS. Your child's primary care provider is probably not trained to make these distinctions. However, she or he should be able to help determine whether further evaluation may be necessary. Consulting specialists may be considered to help make these determinations, and are available through the school district, or privately outside the school district. These consultants may include specialists in neuro-psychology and special education, and privately may also include specialists in child neurology, child psychiatry and psychology, and/or developmental-behavioral pediatric medicine who can evaluate the child with TS.
It is not uncommon for schools to deny parental requests for special education testing. Testing is time-consuming and expensive, and school districts operate under substantial financial constraints. Requests may be denied for any number of reasons, which may include conclusions that there is nothing "medically wrong" with a child, or a child may be performing adequately academically. When this occurs, options available include private testing (outside the school district), and obtaining advocacy support to make a strong case for testing. In either case, it can be very helpful to you and your child to have your child's primary care provider serve as an advocate. Often, a letter from your child's provider stating the need for psycho-educational testing is adequate to overcome the hurdle of the school district's denial for testing. As a medical representative, your child's provider can provide the "medical persuasion" that the school district requires for testing to be undertaken. The issue of advocacy will be discussed further, below.
Once an evaluation has been completed, a written report will be created. THIS REPORT IS CURRENCY for you, the parent, and for your child's primary care provider. The report should be read carefully, understood fully, and used generously to negotiate appropriate services for your child.
Each of the conditions discussed above has its own set of treatment approaches, which include behavioral, supportive and medical options. There is no standard approach, and each approach must be tailored specifically to each individual child.
Recognize the importance of advocacy!
You will need to become an advocate for your child, and if your child is old enough, she or he will need to learn skills in self-advocacy. But you are not alone! Your primary care provider serves as your "Medical Home" (i.e., someone whom you know and trust to act as your family's partner in identifying and accessing all the medical and non-medical services you need to help your child achieve a maximum potential), and can use the written report from the consultant to advocate with you, generally by writing a letter to the school stating what disabilities have been discovered and which services are recommended. While your child's primary care provider is an ideal candidate to participate in an IEP (Individual Education Plan) meeting, there is nary a provider who can realistically schedule such a meeting into her workday. However, in some cases, the specialist consultant may be able to participate directly in an IEP meeting with you to help the IEP team understand the implications, and multi-faceted, aspects of your child's conditions Careful planning goes a long way. Take the time to learn about what your options are, and how to be persuasive in the school environment. Make sure that you work with your child's school, not against it. While you are entitled to feeling frustrated, or perhaps even angry, if you are not satisfied with the services or interventions that your child is receiving at school, remember that the goal is to get services, not to get even!!! Assertive, but diplomatic, advocacy is key!
Although Tourette Syndrome is not categorized as a "disability" that automatically qualifies a child for special education services, many of the co-morbid conditions will necessitate the need for specially designed instruction as mandated by the Individuals with Disabilities Education Act (IDEA). Under this Act, an IEP is drawn up with goals and objectives specific to the child's needs. In addition, if a child does not qualify for special services under IDEA, but has a physical or mental impairment which substantially limits one or more major life activities (education is defined as a major life activity), then Section 504 of the Rehabilitation Act of 1973 allows for accommodations or modifications at school. Even without the presence of co-morbid conditions, children with TS often qualify for a "504 Plan." Accommodations which may be requested on the plan include "tic breaks," extra time for tests, private rooms for test taking, reduced homework assignments, tutoring, tape recording lectures, and other arrangements that are specifically designed to help the child with her very specific challenges. Squeaky wheels do get grease. Be squeaky. Also, consider contacting an advocacy agency, such as PAVE (Parents Are Vital in Education). See "References" at the end of this article.
For very detailed information on how to develop an appropriate IEP and/or 504 plan, I encourage you to go to the website for the national Tourette Syndrome Association, and check their section on Education & Advocacy. Many topics are well covered, including "Getting Help at School – Where Do I Begin?", as well as further information on each of the disorders discussed in this article, special education laws, and much more. See "References" at the end of this article.
One guidebook I frequently recommend to parents and teachers of children with TS is Teaching the Tiger. See "References" below.
REFERENCES:
PAVE (Parents Are Vital in Education) Telephone: 800-5-PARENT Website: www.washingtonpave.org
Teaching the Tiger: A Handbook for Individuals in the Education of Students with Attention Deficit Disorders, Tourette Syndrome or Obsessive-Compulsive Disorder (1995). Marilyn P. Dornbush, Ph.D. and Sheryl K. Pruitt, M.Ed. Hope Press, P.O. Box 188. Duarte, CA 91009. Website: www.hopepress.com
Tourette Syndrome Association, Inc. Website: www.tsa-usa.org, then go to "Education & Advocacy."
Special thanks to Nanette Rosenthal, (editor of Connections newsletter) and to Susan K. Toth Patiejunas, Ph.D. (neuropsychologist at the Center on Human Development and Disability at the University of Washington) for editorial contributions.
Dr. Zinner is an Assistant Professor of Pediatrics at the University of Washington School of Medicine, and a Developmental and Behavioral Pediatrician with the Center on Human Development and Disability at the University of Washington Medical Center.
Canada, Germany and Australia already allow restricted use of medicinal marijuana or its active chemical, but the Dutch go a step further by providing the drug and regulating its quality. In the United States, 14 states allow medicinal use despite a federal ban on the drug.
Dutch patients will be recommended not to smoke the plant, but to use vaporizers or make marijuana tea. Although marijuana is officially prohibited under Dutch law, authorities tolerate the sale of small quantities under a policy that distinguishes between hard drugs such as cocaine and heroine and so-called "soft-drugs" like marijuana.
The following is a statement issued by the national Tourette Syndrome Association regarding the above announcement by the Dutch government:
TSA Statement: Marijuana Use for Treatment of Tourette Syndrome TSA Statement: Marijuana Use for Treatment of Tourette Syndrome
Recently, the government of the Netherlands approved the prescription use of marijuana (Cannabis sativa) for treatment of a number of medical conditions - among them Tourette Syndrome (TS). Although the use of marijuana and its major psychoactive ingredient delta-9 tetrahydrocannabinol (THC) is illegal in this country, the Tourette Syndrome Association is committed to identifying safe and effective treatments for Tourette Syndrome.
A number of therapeutic uses are being explored for marijuana, THC and other cannaboids including pain associated with neurological conditions, arthritis and cancer and for other neurological conditions such as multiple sclerosis, spinal cord injury, peripheral nerve injury, central nervous system damage, neuroinvasive cancer, dystonias, cerebral vascular accident and spina bifida. With respect to Tourette Syndrome, cannabinoid receptors are found in brain regions that are implicated in the basic pathophysiology of Tourette Syndrome, including the basal ganglia - the part of the brain most involved with movement.
Based on this known neurobiological link as well as anecdotal reports of symptom reduction after THC use, the Tourette Syndrome Association supported preliminary investigations in Germany to explore the clinical utility of THC for TS. The results of this and a limited number of other small trials suggest that THC can have a modest beneficial impact on TS symptoms, with minimal neuropsychological side effects. However, full confidence and confirmation of the short and long-term therapeutic role of THC in TS await replication of these findings by independent groups looking at larger numbers of subjects. These research findings are of interest as more definitive studies may lead to new and more specific neurochemical treatments for TS.
There is ample clinical evidence that there are a number of medications with proven efficacy for tic suppression in TS. Although not all people with TS respond to their first treatment, with careful clinical monitoring the vast majority of them find significant symptom relief with available medications. It is important that those with TS and the general public as well avoid misinterpreting the implications of both these preliminary studies as well as the recent action in the Netherlands. At this time the use of marijuana for TS should still be considered experimental, and marijuana should not be viewed as being any more effective than those medications already proven to be helpful in treating TS. The TSA is also concerned that the extensive media attention to the decision taken in the Netherlands might lead some people with TS to "experiment" with "street grade" marijuana. Such use is unsafe and illegal and we advise against it.
Having said that, the TSA remains supportive of the scientific study of marijuana, THC and other cannaboids for potential use for treatment of TS and other medical conditions. Such study may lead to a better understanding of this neurological disorder, and also to improved treatments.
Neal R. Swerdlow, MD, PhD, TSA Scientific Advisory Board; John T. Walkup, MD, Chair, TSA Medical Advisory Board; Sue Levi-Pearl, VP, Medical & Scientific Programs
The TSA, Inc. and the Washington State Chapter do not endorse products, services or manufacturers. Such names appear only as information for our members. TSA assumes no liability whatsoever for information about or the use of any product or service mentioned.
The bipartisan Genetic Information Nondiscrimination Act (S. 1053) will establish strong protections against discrimination based on genetic information both in health insurance and employment. Support for the bill has come from a wide range of organizations representing patients, medical professionals, families and employees. We should give all Americans the comprehensive protections against genetic discrimination in health insurance and employment they deserve by enacting this important legislation.
With regard to health insurance discrimination, the Act will:
Conference Help - We are looking for people to help with our medical conference scheduled for May 2004. We need volunteers to organize the catering, drive speakers on the day, man the information booth, make name tags and other things that will come up between now and then. Some of the work can be done from home and some is just for the day of the conference, so there is a lot of flexibility to fit in with your personal schedule. Contact Bernadette Witty at 206-780-5361 or Bernadette@thewittyfamily.com.
Public Relations/Marketing - We need someone who can focus on the public relations and marketing of our chapter and of Tourette Syndrome in general. This would include working with local media forms (TV, radio, print media) to have PSA's aired and chapter services and events promoted. There are plenty of avenues for non-profit organizations such as ours to have access to this for free, and we want to make use of these opportunities. If you have any background or experience in PR/Marketing/Advertising and could help, we really need you. Contact Bernadette Witty at 206-780-5361 or Bernadette@thewittyfamily.com.
Newsletter Editor - The current newsletter editor will be stepping down in June 2004, which means this newsletter will no longer be produced unless a new editor is found. Many of the articles are written by other contributors, and we have volunteers who do the newsletter layout and who prepare the labels and bundle the newsletters for mailing. You do not have to live in the Seattle area to be the editor. If you are interested in serving the chapter in this vital way, contact the current editor (see page 7.)
Staff the Informational Booth at the I.D.E.A.S. Conference - This conference will be held January 29 and 30 in Spokane. We need volunteers to work parts or all of two weekdays when the conference runs to distribute informational materials to conference attendees and answer questions about TS. The conference is attended by special ed. personnel, teachers and parents. You should live in the Spokane area. Contact Nanette Rosenthal at 206-367-4491 or TSAWASH@aol.com.
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