Winter 2013

Volume 7, Issue 1

BONNE NOUVELLE

Your "Good News" from TSA of Texas

TSA of TX:  Helping Children and Changing Lives 

Tourette's syndrome (TS) is a chronic neurobehavioral movement disorder that begins in childhood.  Those affected make motor movements and vocalizations they cannot control.  Additionally, many are plagued by obsessive compulsive disorder, attention deficit hyperactivity disorder, dysgraphia and behavioral issues.  Today's estimates indicate up to 3 percent (1 in 33) of all children may have Tourette's syndrome.  In spite of its high incidence, TS continues to be greatly misunderstood.  Although medication may help control the symptoms, as of yet there is no cure.  TSA of Texas, one of the largest Chapters in the country, is a 501(c)(3) non-profit organization.  We directly assist Texas area families and children in crisis, 24 hours a day, 365 days a year. 

A Fond Farewell to Super Volunteer Mary Harris

     The TSA of Texas bids a fond farewell and inexpressible gratitude to Super Volunteer Mary Harris.  Mary has been the Children's Support Group leader in Austin for more than seven years -- longer than any other children's leader in the state!  Mary literally and figuratively "wrote the book" on children's craft projects and activities that actually work for our TS kids.   

      As Shelley Matcha, the Austin Support Group leader (and Mary's daughter) says, "It seems like just yesterday that I asked Mom to help with the group, and I remember she was very concerned she wouldn't be able to do a good enough job since she didn't have any special training or experience.  She agreed to do it only because I couldn't find anyone else willing to take it on.  All these years later, I can't imagine that anyone could have ever done a better job.  She has put many, many hours into finding activities that would be fun for the kids, shopping for snacks and supplies, experimenting at home to make sure the crafts would work, spray painting and cutting out little pieces of felt in advance to make it easier for the kids, recruiting friends and family to help her and always trying to figure out how to make it even better.  She never missed a meeting and she was always early.  It was very important to her that the group be a place for the kids to want to come and have fun and not worry about tics - not just a place for them to stay while their parents attended a meeting.  I'm sure you will all agree with me that she exceeded this goal.  She has a huge heart and I'm very grateful to her for her love, support, and years of hard work.  I know she has made a real difference in the lives of her 3 grandchildren and to the many other kids dealing with TS who also call her 'Granny.'  Thanks, Mom!"

      TSA of Texas echoes those words of love, admiration and thanks!  Mary's hard work, dedication and caring created a a model for our children's groups everywhere!  Mary, we will miss you and so appreciate all you have done to help and support so many children with TS through these years. 

      We also have good news to share with you: Kate Knapek has agreed to take over the Austin children's group!  Kate, an educator, has already attended many meetings over the years and is ready and willing to do an awesome job.  She has already recruited her husband, Edward, to help her out for awhile!  If you or any other adult you know would also like to help Kate with the kids group, please let Shelley or Kate know! 

 The Austin area TS Support Group meets the first Tuesday of most months from 6:30 pm to 8:00 pm in McFadden Auditorium at Seton Medical Center, 1201 West 38th Street, Austin.  For more information, contact Shelley at shelley.matcha@gmail.com. 

Texas Hotlines

Houston:  281-238-8096

Quick Links

Support Groups

All support groups are FREE of charge and have supervised fun for kids with TS and their siblings while adults meet separately.  TSA of Texas has support groups in:

• Austin 
• Corpus Christi
• Dallas
• Fort Worth
• East Texas/Golden Triangle
• Gulf Coast
• Katy / Sugar Land
• Lubbock
• North Houston / The Woodlands 
• Rio Grande Valley
• San Antonio
• Tyler / Longview

To start a support group in your area, please contact us toll free at 866-894-8686. 

    Our second annual Targets for Tourette's Sporting Clays Shoot is less than 4 weeks away -- on Friday, March 22.  Please join us there or help us raise funds for TSA of Texas by sharing information about T4T with friends, family, business acquaintances -- any one interested in a Texas-sized fun time and a great cause!

What Are Tics?          By Amber Stocco, M.D.

     What are tics?  Tics are brief, sudden, stereotyped movements or sounds that increase with stress, anxiety, or excitement. The exact pathophysiologic mechanisms are unknown, but the disorders are likely to be due to disturbances in the basal ganglia.Comorbid conditions such as anxiety, OCD, and ADHD are common. 

     Transient tic disorders (lasting <1 year) are very common in childhood and have been estimated to occur in up to 24% of schoolchildren. Boys are more commonly affected than girls. Chronic tic disorder (motor or vocal tics for >1 year) is less common. Tourette's syndrome (multiple motor and at least one vocal tic for >1 year) has an estimated prevalence of 1 to 10 per 1000 children and adolescents, with a male to female ratio of 3:1 and a mean age of onset between 6 and 7 years.

     It is hypothesized that tic disorders result from a disturbance in the basal ganglia, leading to disinhibition of the motor and limbic systems. This hypothesis is supported by neuroimaging studies that suggest that the pathophysiology of Tourette syndrome involves projections of the primary, secondary, and somatosensory cortex to the basal ganglia. Tic disorders are frequently present in multiple family members, indicating a genetic basis for these disorders. Linkage studies have found several different chromosomal regions responsible, including chromosome 14q31.1 for Tourette syndrome. Other genes under investigation include the SLITRK1 gene and the HDC gene, which encodes for L-histidine decarboxylase. Many researchers feel that Tourette syndrome likely does not have a monogenic mendelian pattern of inheritance, but rather results from the interplay of multiple genes. Immunologic mechanisms have also been hypothesized to play a role in the pathophysiology of tic disorders.

     The diagnosis of tic disorders is made on the basis of the history and a normal physical exam. No further investigations are necessary unless the presentation and clinical findings suggest other possible differential diagnoses that need to be ruled out.

The exact prevalence of a positive family history is unknown in patients with transient tics in childhood.The family history is positive in up to 46% of patients with Tourette syndrome. The earlier the onset of tics, the more likely there will be a positive family history. A large observational study evaluating patients with Tourette syndrome found that up to 80% had a first-degree relative with a psychiatric disorder, most commonly obsessive-compulsive disorder (OCD), attention-deficit/hyperactivity disorder (ADHD), or depression.

     A large international study of 3500 patients found that 60% of patients with Tourette syndrome had ADHD, 27% had OCD, 32% had obsessive compulsive behavior, 23% had a learning disorder, and 15% had a conduct disorder or oppositional defiant disorder (ODD). Boys were also more likely to have comorbidities than girls.

     Up to 80% of all patients describe an inner urge or a local premonitory sensation, which is then relieved by performing the tic. This is more common for adults than for children.

     Patients are able to temporarily control or suppress tics for short periods of time (for some patients this may only be for a few seconds with much effort), but this helps to differentiate from focal seizures, which the patient cannot control. 

     Tics can increase and decrease in severity (often described as waxing and waning) over time (days to weeks to months).  Tics may become less frequent if the patient is engaged in other mental tasks. Tics may increase in frequency with increasing stress, anxiety, or exciting situations.

     Neurologic exam is generally normal, except for observed tics.  However, minor abnormalities may occur and include minimal difficulties with coordination and fine motor tasks, chorea minima and restlessness. If neurological exam is abnormal (such as increased tone, spasticity, rigidity, or weakness), tics may be secondary to another condition, and an MRI of the brain, with and without contrast, should be performed. The patient should be referred to a neurologist.

     Most tics in children are transient and do not require treatment. Even patients with mild Tourette's syndrome may not require treatment. If treatment is required, the main goal is to optimize the quality of life for the patient through reduction of tics and improvement of behavioral issues.

     Education of the patient, parents, and teachers is the most important initial step. Patients and their parents should be reassured about the benign nature of tics. They should also be aware of the tendency for tics to increase in times of stress, anxiety, and excitement. The family and the school should try not to focus on the presence of the tics. Patients should be screened for comorbid disorders, such as ADHD or OCD.

     Treatment is indicated only for those patients whose tics are interfering with activities of daily living, social interactions, or school or job performance. Cognitive behavioral therapy, including habit-reversal training, is the only available nonpharmacologic treatment. This training is performed by trained professionals.

     Most physicians use pharmacotherapy to treat tics which affect quality of life and activities of daily living. If pharmacologic therapy is indicated, treatment should be chosen based on the side effect profile and presence of comorbid conditions. Because a large proportion of the patients are children, medication dosing for an individual patient should be confirmed based on the patient's age and weight.

Dr. Stocco is Director of the Movement Disorder Clinic and the Co-Director of the Cerebral Palsy clinic at Texas Children's Hospital.  She also volunteers annually at the Texas Camp du Ballon Rouge as a camp physician.

     The Friday Neurology Clinic at Texas Children's Hospital Tic and Tourette Syndrome Clinic in Clear Lake is now designated solely for children with Tourette's syndrome and Tics. This new Clinic is exclusively designed to better meet the needs of children with Tourette's syndrome and will focus on medical management of tics; address concurrent conditions associated with Tourette's Syndrome, such as ADHD, anxiety, migraines, etc.; and provide family education and proactive measures for school and home issues associated with tics and TS.

     Please call 832-822-1250 to book appointments at for the Friday Tic Clinic.  Do NOT use the central TCH scheduling number as they will not have access to book these spots. 

The Friday Neurology Clinic is managed by Amber Stocco, M.D.  See her article above.

• March 5 - Austin TS Support Group meeting
• March 5 - San Antonio TS Support Group meeting
• March 9- Dallas/North Houston TS Support Group meeting
• March 13- Katy/Sugar Land/West Houston TS Support Group meeting
• March 19-21 -- New Youth Ambassador Training & Trip to the Hill
• March 22- Join us for Texas-sized fun at the second annual Targets for Tourette Sporting Clays Shoot at the Greater Houston Gun Club.
• March 27- Gulf Coast/Galveston/Pearland TS Support Group meeting
• April 19 - April 21- Reserve your child's place NOW at our 11th annual du Ballon Rouge Children's weekend at Camp For All.  Applications available on the web. 
• May 15 - June 15- National Tourette's Syndrome Awareness Month.  Help us spread information about TS to your schools, businesses, physicians and more.  Visit the web for handouts or contact the office for packets of information.

Edlyn and David Pursell

     Our "Hope In Bloom" Chairmen were Edlyn and David Pursell.  Edlyn is a graduate of Texas A&M in math and engineering ... and a "go-getter" who has "chaired" everything from PTO to Swim-Team.  Active in City Art Works and Ronald McDonald House, when she is not organizing a multitude of projects (which is almost never) you can find Edlyn in the garden or in the kitchen - expertly canning and preserving the produce she grows.

      David is also an alumni of Texas A&M, receiving his Undergraduate and Graduate degrees in Petroleum Engineering.  David is Managing Director at Tudor, Pickering, Holt & Company and has been extremely active with and supportive of the Tee Off for Tourette Golf Tournament.  When not hard at work in town, David can be found hard at work in the country, driving his giant tractor and managing his pond. 

      Edlyn and David are the parents of three amazing children: Corey, Kamryn and Jordyn.  

Drs. Carol and Patrick Brady

     Honoree Dr. Carol Brady is a clinical psychologist, a specialist in school psychology and an

expert in the area of child and family psychology.  Dr. Brady has various areas of expertise, but is primarily known for her work with children and families.  She has secured a reputation for working in play therapy to help youngsters deal with a wide range of life events, including adoption, grief, trauma and loss.  Dr. Brady offers services in psychotherapy designed to meet the particular needs of the family and client.  Traditional play therapy is usually supplemented by parent sessions or family sessions.  Dr. Brady occasionally works with adult clients and also does work involving post-divorce issues.  In addition, Carol has done research and has handled many cases involving the process of step-parenting. 

      She is on the Medical Advisory Board of the Tourette Syndrome Association of Texas, the Advisory Board of ADDitude Magazine, and on the Adjunct Faculty of both Baylor and the University of Texas.  Additionally, Dr. Brady has a long-standing relationship with St. Luke's where she has often been invited to do "Lunch Bunch" or to consult with teachers.  Currently, Dr. Brady is extremely well-known for her work in dealing with children who have neuro-behavioral issues such as Tourette's syndrome, Attention Deficit Hyperactivity Disorder and Obsessive-Compulsive Disorder.  Her amazing work and success with our often difficult and misunderstood T.S. youngsters has made an indelible difference in the quality of so many lives and has given countless families real hope. 

     "Doctor Carol" is the beloved, long-time volunteer psychologist at Camp du Ballon Rouge for children diagnosed with Tourette's syndrome.  Town and Country magazine ranked Dr. Carol Brady in the top ten of their "National Top 100 Therapists" review.   The TSA of Texas is forever grateful Dr. Brady for her loving expertise, compassion and dedication to our TS families and children.  

Michael Conway

     Honoree Michael Conway is a graduate of Texas Christian University and is currently the Endowment Compliance Program Manager at MD Anderson Cancer Center.

      In his junior year of college, Michael was diagnosed with a malignant brain tumor, which was successfully treated with surgery and radiation.  And, as if that were not enough, shortly after his battle with cancer, at the age of 21, Michael was also diagnosed with Tourette's syndrome. Since his diagnosis with TS, Michael has been deeply involved with the Tourette Syndrome Association of Texas.  He is the current Board President and its children's camp founder and Director.

      Michael states he is actually thankful for having had cancer and for living with TS because of the outlook on life that it has provided him, and the opportunities it has afforded him to help others.  He has been active with Candlelighters, a non-profit serving families with a child diagnosed with cancer, and Camp For All, a non-profit accessible campsite in the Hill Country where children with health issues or disabilities can be "regular" kids. 

      For his exemplary work, Michael received Houston Grand Opera's "Ovation" Award, given to the "next generation of dynamic civic leaders for volunteer and philanthropic endeavors."  Most recently, Michael has taken up the sport of triathlon.  He always jokes with other athletes before every race that he is going to win his division - the movement disorder division!

     Michael's amazing and optimistic outlook, his resilience, courage and professionalism make him a super role model and a source of inspiration for the children and families living with Tourette's and indeed - for all of us.

 

Dr. Jay and Laura Tarnow

     Honoree Jay Tarnow, M.D. is the Medical Director of the Tarnow Center for Self Management.  He is a board certified Child, Adolescent, and Adult Neuropsychiatrist, and he is a Distinguished Fellow of both the American Academy of Child and Adolescent Psychiatry and of the American Psychiatric Association.

     Dr. Tarnow has served as Executive Director of the Houston Child Guidance Center and as Director of Child Psychiatry Training at the University of Texas Medical School in Houston. He was also the Director of Pediatric Psychiatry at Texas Children's Hospital and Baylor College of Medicine. He was a City Commissioner on the Houston Human Services Advisory Council and was an active member of the Mayor's Task Force on Drug Abuse and Children. He has served on the Board of the American Association of Psychiatric Services for Children and was the President of the Houston Society of Adolescent Psychiatry.

     Over fifteen years ago, the Tourette Syndrome Association asked Dr. Tarnow to develop a program to educate physicians and parents regarding the psychosocial aspects of Tourette's syndrome. This gave him the opportunity to get in touch with a larger population of children and adolescents, and learn from them about their disorder. Subsequently, Dr. Tarnow developed a multi-faceted treatment approach that has helped countless children and their families live with the enigma of Tourette's syndrome.   

     To quote Dr. Tarnow:  "Tourette's syndrome affects so many different aspects of a child's life and development, but most concerning are the effects on the child's self-esteem. Children with Tourette's have very special qualities such as stubborn determination, boundless energy, and unique individualism. These attributes can play havoc in their childhood, but these same qualities can be true gifts to them and to society once the child becomes an adult. Our job is to protect these children early on, when they are less able to cope with the burdens that this disorder places on them. Our job is to educate and support parents who are feeling bewildered and overwhelmed on how to help their children."

     The Tourette Syndrome Association of Texas is truly grateful to Dr. Tarnow for his many years of dedication and support -- and the insightful practice of medicine given with "large doses of hope." 

Physician Referral List

How Can TSA of Texas Help You?

TSA of Texas is here to assist families dealing with TS throughout the state.  We offer:

• EDUCATIONAL PRESENTATIONS for physicians, school districts, students, parents and the community.   
• INFORMATION DISSEMINATION via packets, brochures, web site downloads, email and telephone conversations.  
• LIBRARY of DVDs, videotapes and books. 
• REFERRAL to physicians, therapists, community services, and state and county agencies.  
• ADVOCACY through assistance with ARDs, IEP, 504 or OHI classification.  
• SUPPORT GROUPS throughout the state.  
• CHILDREN'S WEEKEND camping program "du Ballon Rouge."
• FAMILY ACTIVITIES such as baseball games, museum visits, swim parties, theater outings and more. 
• SPECIAL FUNDING sources such as the Kenneth H. Davis Family Assistance Fund and Fund A Need. 
• ...and much, much MORE! 

Call TSA of Texas at 281-238-8096 (toll-free 1-866-894-8686) or email TouretteTexas@aol.com for more information.  Visit our web site at www.TouretteTexas.org.  If you have needs other than those listed above, please let us kno w and we will do our best to help. 

TSA of Texas funds its services through private donations, fundraising events and grant support.  We receive no state or federal funding.  You can help TSA of Texas and support Texas families dealing with TS by:

• ATTENDING our fundraising events (e.g., our major Gala held each January, Targets for Tourette's Sporting Clay Shoot in March; or our Tee-Off for Tourette in October),
• DONATING items or gift certificates for Silent Auction at either Gala or Tee-Off,
• ORDERING a tribute card sent in honor of someone's special event or sent in someone's memory  
• CONTRIBUTING via cash, check or credit card to our general fund or a support group of your choice,
• DESIGNATING TSA of Texas to receive 10-100% of your final sale price the next time you list something on EBAY.  Or look for listings that support TSA of Texas when you shop at the TSA of Texas eBay Giving Works page.
• LINKING your Randall's or Tom Thumb Remarkable Card to charity #2493, or 
• DOWNLOADING a Kroger Neighbor to Neighbor bar code to link to your Kroger Share card. Click here.  NOTE:  Kroger MUST be re-lnked each year starting in June.

All donations are totally tax deductible.  Learn More>>