The effect of Tourette syndrome on the education and social interactions of a school-age child.
"Laurel," a 10-year-old fifth-grader, presented to the elementary school health office with eye twitching, nose blowing, and throat clearing. The school records indicated a history of mild facial tics (i.e., eye blinking, sniffing, lip curling upward on one side) during the past 2 years. The girl's grandmother had noticed an increase in the facial tics and throat clearing during the preceding summer; when school started in the fall, the throat clearing had become quite obvious.
Laurel's mother had had a normal pregnancy until she was in an automobile accident at 7 months gestation. The stress test and ultrasound conducted at that time indicated that the fetus was not growing at the appropriate rate for gestation. Because of the failure of the pregnancy to progress, the baby was born near term via Cesarean section. At birth, Laurel was alert, weighed 8 lb 9 oz, and was 19 1/2 inches long. She was born with hypochondroplasia.
Laurel later experienced symptoms of obsessive-compulsive disorder (OCD) and attention-deficit/hyperactivity disorder (ADHD). There was no family history of OCD, ADHD, or Tourette syndrome.
When Laurel presented to the health office at age 10, she had an individual education plan for reading, writing, mathematics, and emotional-behavioral issues. Her only medication was fluvoxine. She was immediately referred to her primary care physician, who stopped the fluvoxine and started clonidine. The frequency of the tics decreased considerably at school. Three weeks later, she was seen by a pediatric neurologist. Based on her symptoms and normal computerized tomography (CT) head scan, the neurologist diagnosed her with Tourette syndrome. The neurologist discontinued the clonidine and started topiramate at 15 mg daily, to be increased weekly by 15 mg to a maximum dose of 45 mg twice daily.
Laurel's tics increased dramatically as the clonidine was tapered off. She began to have loud verbal barks with eye blinking. She became extremely self-conscious. Within 10 days, the barking was almost nonstop at school, and she was unable to be in the classroom. A special education assistant was hired to work with her one on one until the topiramate reached its maximum effect.
With each dosage increase, the one-on-one attention, and removal from the classroom, the tics became less frequent. However, when the special education assistant's position ended after 6 weeks and Laurel was placed back in the classroom, the frequency of the barking tics increased to 80-130 tics per day. New tics developed: tossing the head back and repetitive talking to herself about trying not to have tics ("Stop it, Laurel, stop it").
Laurel lived sometimes with her mother and sometimes with her grandmother. These changes at home appeared to affect the frequency and severity of the tics at school. It was noticed that noisy environments caused more tics. Tics also were more frequent during physical education, a class she did not like. When she was in a small-group setting, the tics were inconsistent (i.e., 0-30 tics in a 20-minute period).
Throughout the 6-week topiramate increase, the family had seen or heard few tics at home. Then, one night Laurel had constant tics for 2 1/2 hours, which kept her awake, and 150 tics during I hour the next morning. She did not have tics while she was sleeping. Her family also noticed a dramatic increase in the vocal tics. At this point the family requested a second opinion.
As a result of the second opinion, Laurel was tapered off topiramate during 2 weeks and started back on clonidine. The goal was to increase the clonidine dosage until the tics stopped or side effects developed. Once off topiramate, she received risperidone because the tics were persisting, although less frequently. Before risperidone was administered, an electrocardiogram and liver function tests were conducted; the results were normal. At the end of the school year, Laurel was taking 0.1 mg clonidine and 1.0 mg risperidone in the morning and 0.1 mg clonidine and 0.5 mg risperidone in the evening.
By May, Laurel's teachers noticed that the tics had changed. Vocal tics, including barking, were less frequent and intense, but they still affected her time in the classroom. Facial tics continued. Anxiety-induced tics caused many missed days of school.
Tourette syndrome is a neurological condition that is thought to have a genetic component (Bruun, Cohen, & Leckman, 1984; Tourette Syndrome Association (TSA) 2004). Tourette syndrome is characterized by involuntary bouts of vocal tics, motor tics, or both, which occur several times per day. Symptoms usually first occur before 18 years of age, and they persist for more than 1 year (Zinner, 2004). Boys are affected 3-4 times more frequently than girls. Behavioral and developmental symptoms are frequently present; they may include ADHD, obsessive-compulsive behavior, emotional labiality, impulsivity, aggressions, self-injurious behavior, and learning disabilities (Bruun et al.; Zinner). People with Tourette syndrome often have normal intelligence, but they have problems with attention, perseverance, and organization, which affect their learning (Bruun; TSA).
A diagnosis of Tourette syndrome is made by observation of the tics and completion of a thorough health history. Observing symptoms can be difficult, because the tics can change in severity and character from hour to hour. The first symptoms are often facial--eye blinking, twitching of the mouth, or throat clearing (TSA, 2004). Practitioners frequently obtain a head CT scan and laboratory work to rule out other movement disorders.
Tics may be simple or complex, vocal or motor. Simple vocal tics consist of meaningless sounds or noises (e.g., barking, coughing, grunting, throat clearing, sniffing). Complex vocal tics consist of words or phrases having a meaning ("Oh boy," "Shut up," "You're fat"). Simple motor tics are fast and meaningless (eye blinking, facial grimacing, nose twitching, shoulder shrugging, limb tics). Complex motor tics are slower and may appear purposeful (clapping, hopping, making funny expressions; TSA, 2004; Zinner, 2004). Tics increase in severity and frequency during times of tension or stress, such as certain peer interactions or academic requirements.
A thorough assessment of the nature, severity, and frequency of the tics is essential (Bruun et al., 1984). It is helpful to determine the extent to which the tics interfere with school, family, and social experiences. Associated difficulties that affect family and school relationships, such as OCD, ADHD, or learning disabilities, may also affect treatment options.
The majority of people with Tourette syndrome experience mild tics and do not require medication. When tics interfere with daily living, medications can control or minimize the symptoms. Commonly used medications include clonidine, haloperidol, pimozide, fluphenazine, and clonazepam (Bruun el al., 1984; Zinner, 2004). For obsessive-compulsive symptoms that affect daily living, fluvoxine, clomipriamine, sertraline, risperidone, or paroxetine may be prescribed (Bruun et al.; Zinner). Stimulant medication may exacerbate the tics and should be avoided (Zinner). In addition, psychosocial therapy can be used to enhance family coping skills and to teach the child biofeedback or relaxation techniques to reduce-stress (TSA, 2004). For a school-age child, teaching and learning should occur in the least restrictive environment possible (Bruun et al., 1984). The goal of treatment is for the child to feel competent at school, develop friendships, trust his or her parents, and enjoy life (Bruun et al. 1984; TSA, 2004).
Laurel was able to stay in school, with the help of an assistant to work with her individually. She was able to participate in classroom activities, especially music and library, when she felt comfortable and there was low stress. Other students in her classroom tried to ignore the loud barking tics, but at times they were unable to control their frustration and would become angry with her or complain that they couldn't concentrate. The classroom teacher set ground rules to prevent teasing or imitating behaviors, explaining that Laurel was unable to control the tics and that her peers needed to show compassion and tolerance.
Tourette syndrome and hypochondroplasia were major obstacles in this child's ability to socialize and feel comfortable with her peers. She lacked social skills or the ability to empathize and identify with another's feelings. Psychosocial therapy was initiated in the fall of the school year and continued weekly throughout the year. In therapy, she worked on social skills and discussed family, social, and physical concerns. She also attended a weekly friendship group, organized by the school psychologist, to work on social skills and peer interactions in a school or community setting. Throughout the school year, she was sensitive about her physical size and her tics.
In general, families may have difficulty coping with the emotional and social symptoms associated with Tourette syndrome. For Laurel and her family, it was also necessary to cope with the physical differences related to hypochondroplasia. Anxiety and stress intensified the symptoms while she was at school. The tics rarely occurred at home, where she felt comfortable and accepted by her mother and her grandmother.
Bruun et al. (1984) stated that the goal of medication and therapy is for a student to feel comfortable with peers and in the school community. Laurel's medical and school communities achieved progress toward this goal, but it was not totally achieved during the school year. Laurel continued to struggle with tics in the school setting. She also continued to feel self-conscious and had difficulty interacting appropriately with her peers.
Nurses who work with children and teens with Tourette syndrome need to be cognizant of the social and educational challenges these children face. The challenges can be especially difficult during the late-elementary and teenage years. Students who feel self-conscious tend to avoid their peers and isolate themselves. Because students with Tourette syndrome may also experience symptoms of OCD, ADHD, or both, academic work may be difficult for them. Nurses should support individual and family therapy and should facilitate access to educational resources as a means to help ease the family's stress.
Bruun, R. D., Cohen, D.J., & Leckman, J.F. (1984). Guide to the diagnosis and treatment of Tourette syndrome. New York:Tourette Syndrome Association.
Tourette Syndrome Association. Frequently asked questions. Retrieved September 18, 2004, from www.tsa-usa.org/what_is/Faqs.html.
Zinner, S.H. (2004). Tourette syndrome: Much more than tics--Moving beyond misconceptions to a diagnosis. Contemporary Pediatrics, 21(8), 22-49.
Questions or comments about this article may be directed to Bonnie Ohm, MS RN CPNP, at firstname.lastname@example.org or 608/238-3751. She is a licensed school nurse with Madison Metropolitan School District, Madison, WI.
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|Title Annotation:||neuroscience nursing research|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Jun 1, 2006|
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