Schoolnurse03.indd

A TSA EDUCATION PUBLICATION
by Lawrence Scahill, MSN, Ph.D. and Sharon Ort, RN, MPH Patrick, a 9-year-old fourth grader, was brought into the school nurse’s (Mary Jones) office to wash an abrasion on his face. He had been in a fight with another boy during recess. As Ms. Jones cleaned Patrick’s face, she inquired about the fight. “Johnny called me a weirdo,” Patrick said. “Why did he call you that?” Ms. Jones asked. “Because of my habits; I make faces, I blink my eyes, sometimes I jerk my arms. Johnny says I tried to hit him—I didn’t.” As Patrick talked, Ms. Jones observed some of these movements. She noticed eye blinking, facial grimacing, shoulder jerks and tensing of his abdominal muscles. Patrick also sniffed and cleared his throat frequently. She wondered if he had a cold, if he had been crying, or perhaps these noises were tics as well. Ms. Jones sent Patrick back to class and decided to review his medical record. She also scheduled a meeting with Patrick’s teacher.
The 4th grade teacher reported to Ms. Jones that she too had noticed Patrick’s facial grimaces, arm movements and noises. In fact, she had moved him to the back of the room because he was unable to sit still and be quiet. At least in the back of the room, he would be less noticed by his classmates. He was falling behind in his assignments, and the teach-er had just sent a note to Patrick’s mother requesting a conference. She also recalled that Patrick had recently received a detention for fighting on the bus.
Transient tic disorder is characterized by one or
Tics are repetitive, involuntary movements (motor tics) more motor tics or phonic tics (but not both) that are or utterances (phonic tics) that may be simple or com- present for a period of weeks to months and then dis- plex. Simple motor tics involve brief, rapid movements appear. The most common motor tics are eye blinking such as eye blinking, facial grimacing and head jerking. or other facial tics. Phonic tics may include throat clear- Examples of simple phonic tics include throat clear- ing or snorting. Transient tics are common in school age ing, grunting and snorting. Children may also exhibit children and are usually mild with minimal interference more complex motor tics such as hopping, spinning or in school performance or peer relationships.
repetitive touching. Complex vocalizations may include Chronic tic disorder is differentiated from transient
repetitive phrases such as “wow,” “honey” or “oh boy.” tics by duration in that either motor or phonic tics, but Sometimes tics occur in orchestrated bouts in which not both, are present for more than a year. Chronic mo- various tics happen in close succession.
tor tics are probably more common than chronic vocal Tic disorders are classified by the age of onset,
tics. The presence of chronic motor or phonic tics does duration of symptoms, and whether both motor and not necessarily herald the onset of Tourette Syndrome. phonic tics are present. The available evidence suggests Nonetheless, chronic tic disorders may be severe in that tic disorders reside on a continuum from mild to their own right and require treatment. Furthermore, a severe, though additional research is needed to confirm chronic tic disorder may be a manifestation of the same Tourette Syndrome (TS), which was first described
by the French neurologist, Georges Gilles de la Tourette, Estimates of prevalence for transient tics, chronic tic is a more severe tic disorder characterized by the pres- disorder and Tourette Syndrome vary due to differences ence of chronic motor and phonic tics. The essential in the definition of TS, as well as different methods of data collection and community sampling. Transient tics appear to be relatively common in school-age children and may be as high as 10 to 15 percent. Estimates for chronic motor or vocal tics are in the range of 1 to 4% • Both multiple motor and one or more vocal tics depending on the population studied. By contrast, the present at some time during the illness, not nec- prevalence of TS has been estimated to be approximate- ly 1-10 cases per 1,000. The largest study to date was • Tics occur on a daily basis, persist for at least carried out in Israel with sixteen and seventeen year-old one year with no tic-free periods of more than 3 army recruits. This study observed a prevalence of 1 per 2000. A more recent study in Sweden identified 6 cases — Diagnostic & Statistical Manual - Fourth Edition, TR per 1000 in school-age children, suggesting a higher American Psychiatric Association, 2000. prevalence in this age group. Boys are more commonly affected than girls. TS occurs in all social groups and Although TS is often regarded as the most severe of the tic disorders, symptoms range from quite mild to severe. The number and frequency of tics not only vary among children with TS, they also vary within a given child over time. Tics may be inhibited in school or at a neigh- bor’s house only to become very frequent as soon as the In addition to motor and phonic tics, as many as 50% child arrives in the safe environment of home. Tics may of children and adults with TS have recurring thoughts be worsened by life stress, fatigue and excitement. Curi- (obsessions) and/or repetitive habits (compulsions). ously, focused activity usually results in a reduction of In some cases, though certainly not all, these clinical tics, but relaxing activities such as watching television features emerge after the onset of the tics and they can may be accompanied by more tics. The average age of be quite distressing. Common compulsions include the onset is about seven years old with eye blinking, facial need to arrange objects in rows or patterns, repeatedly movements, head jerks, throat clearing or grunting turning light switches on and off, tying and retying being the most common early symptoms. In its most shoes and performing cleaning rituals. Children may re- severe forms, TS may present with near constant, force- port the need to repeat a behavior until it feels or looks ful motor and phonic tics that occur in bouts. A small “just right.” These compulsive behaviors may be as dis- percentage of children with TS may utter obscene vocal- ruptive as the tics and may impair school performance. izations or gestures and, very rarely, a few might mani- For example, a child might write and rewrite sentences fest self-injurious behavior. In most cases, the tics of TS in class, or go over the same letter so many times that decline in severity by young adulthood.
assignments are not completed. In some cases, children Tics are defined as involuntary. However, many become stuck in their repetitive behavior and are unable children and adults describe an urge or a feeling of to move on to the next activity until they get it “just localized tension that precedes their tics. Children with TS often report that if they do not make a certain Obsessions can also be distressing for children with movement or sound, they will feel “weird,” “uncomfort- TS, and they may find it difficult to talk about their re- able,” or as if they will “explode.” Some children de- curring thoughts. Some repetitive thoughts, such as the velop elaborate means to camouflage their tics such as frequent intrusion of a certain song, a phrase or num- brushing hair from the face to mask a head jerking tic, ber sequence, can be a distracting nuisance to young dancing movements to hide spinning around, or hitting people. More distressing are recurring thoughts of harm themselves while performing a socially unacceptable in the form of illness or injury coming to one’s self or act such as “giving the finger.” Differentiating between family members. Less common, though equally distress- complex tics, behavior intended to camouflage tics and ing, are recurring thoughts about committing harmful impulsive behavior can be a challenge requiring careful acts. These thoughts are distressing because the child may struggle with an urge to do something aggressive while knowing that he (she) does not want to commit such an act. If the obsessive-compulsive symptoms take Children with TS often worry about the reactions of up time on a daily basis, cause distress and interfere others to their symptoms, and some may become the with ordinary routines, a formal diagnosis of obsessive- object of teasing. Moreover, results from recent studies compulsive disorder (OCD) may be appropriate.
suggest that some children with TS may also be predis-posed to anxiety disorders. OCD symptoms may also Hyperactivity, inattention and disruptive behavior be a source of anxiety and distraction. Children with Other common behavioral problems associated with ADHD may have additional social impairment due to TS in childhood involve the regulation of attention and their impulsiveness and disruptive behavior. Given the activity. In clinic samples, 50% or more of the children potential for these negative social consequences, it is with TS have difficulty concentrating, are distractible, not surprising that some children and adolescents with impulsive and over-active. These familiar symptoms of TS may become anxious, tense and discouraged. Despite Attention Deficit Hyperactivity Disorder (ADHD) often efforts to suppress them, the inevitable recurrence of precede the onset of tics and may manifest in different tics may add to this discouragement. Academic failure combinations such that some children are primarily may further erode the child’s self confidence. Thus, as inattentive, while other children may be predominantly with other chronic conditions, the secondary problems hyperactive or impulsive. ADHD is often associated of TS and the individual child’s response to having this with disruptive and defiant behavior. Several studies distressing disorder may be as important as having the have shown that children with TS and ADHD have disorder itself. Education of the child, family and school greater impairment in school, home and with peers than personnel is essential to promote optimal development.
those with TS alone. Thus, when they occur, these be-havior difficulties often overshadow tic problems.
The cause of TS is unknown, but it appears to be due to Most children with TS have average intelligence. Nev- a genetically transmitted vulnerability. TS is consider- ertheless, some may have specific learning disabilities. ably more common in families with an affected member Children with learning problems should be carefully than in the general population. Secondly, twin studies assessed in order to identify the specific disability and have shown that identical twins, who have all of their design an appropriate educational program. Moreover, genes in common, are far more likely to be mutually because learning disabilities may coexist with ADHD, affected by TS than fraternal twins (who share half some children with TS and a learning disability may of their genes on average). Finally, careful analysis of also exhibit disruptive behavior. As with other children the inheritance of TS suggests that it is transmitted in with ADHD, these children may require additional families, though it may not be caused by a single gene. structure in the classroom to ensure academic suc- Accumulated evidence from various studies suggests cess. Also, they will need specific remediation for their that the presumed inherited vulnerability results in a learning problems. The extent to which these problems dysregulation in brain circuits that connect the frontal of learning and disruptive behavior are part of TS or cortex and the basal ganglia. These brain circuits are merely additional problems is unclear and is a matter of known to be involved in the planning and execution of movement, and are also known to play a role in other In summary, although many children with TS do quite well in a mainstream educational program, oth- Although there is considerable evidence that TS ers may require special education services. Having TS is genetically transmitted, the disorder demonstrates can interfere with educational progress in several ways: a wide range of expression. Indeed, the severity of TS direct interference from tics, intrusive thoughts and re- varies greatly from one individual to another within the petitive behaviors, symptoms of ADHD, and/or specific same family. This variability is also true among mutu- learning disabilities. Special educational services may ally affected identical twin pairs. Thus, it is clear that consist of modest accommodations in the mainstream environmental factors also play a role in TS severity. classroom, assignment of a teacher’s aide, resource room These factors may include adverse perinatal events, assistance, placement in a special classroom setting, or, exposure to stimulant medications and perhaps stress- in rare cases, day hospital programs or placement in a ful life events as well. Recent research has also raised the possibility that group A beta hemolytic streptococ-cal infections may induce an exacerbation in tics. This intriguing hypothesis is in the early stages of scientific Not only is there an increased frequency of OCD in inquiry. Accordingly, conclusions about the role of im- relatives of individuals with TS, but OCD appears munologic processes in tic disorders must await further to follow the predicted pattern of genetic transmis- investigation. Currently, there are no specific treatment sion. The genetic connection between TS and ADHD recommendations based on the strep theory.
is less clear. Although ADHD does occur at higher Twin and family genetic studies also provide in- than expected rates in the families of children with formation regarding the relationship of TS, OCD and TS, that disorder does not appear to follow a simple ADHD. Genetic research has supported the clinical genetic transmission pattern. Additional research may impression that TS and OCD are related conditions. help to unravel the relationship of TS and ADHD.
Ms. Jones reviewed Patrick’s school record which indicated that he was of average intelligence. Although there had been some concern about his academic performance in kindergarten, he was promoted to the first grade and had remained in mainstream classes since. His second grade teach-er had reported excessive eye blinking and facial movements, but they were dismissed as “nervous mannerisms.” Patrick occasionally received unsatisfactory reports for distractibility, inattention and disruptive behavior throughout his school years, but he had not demonstrated any serious conduct problems.
Patrick’s medical record revealed that he was healthy with no history of major illness, serious injuries or hospitalizations. He had occasional bouts of otitis media which apparently responded to antibiotic treatment. His frequent eye blinking prompted a referral for an eye examination which was negative.
Ms. Jones contacted Patrick’s mother to inform her of Patrick’s abrasion and scuffle in the playground. She asked Patrick’s mother whether she had noticed his movements and sounds at home. At that point Patrick’s mother started to cry. She didn’t know what was happening to her son—he was making all these noises and movements, fighting with everyone at home and on the bus, and she had recently received a note to confer with Patrick’s teacher. Ms. Jones arranged a meeting with Patrick’s parents on the same day as their meeting with his teacher.
Ms. Jones listened to the description of Patrick’s symptoms and suggested that these “nervous mannerisms” and behavioral difficulties could be part of a neurological disorder called Tourette Syndrome. She advised Patrick’s parents to consult with their primary care practitioner who very likely would make a referral to a pediatric neurologist, child psychiatrist or developmental pedia-trician. She also gave the family the address of the Tourette Syndrome Association to obtain addi-tional free information.
in most cases, tics do get milder as the person matures The school nurse or nurse practitioner in a school-based into adulthood. Although it is difficult to predict which clinic can play an important role in the identification of children will go on to have severe tic symptoms as they children with tic disorders. A child who is sent to the develop into adulthood, tic disorders are generally not nurse’s office for medication, or to a school-based clinic progressive conditions. Even for children with severe for assessment may provide the opportunity to identify TS in childhood, tics tend to change in number and a previously undetected tic disorder. For children who frequency over time. One movement or vocalization will have already been diagnosed with TS, the school nurse be replaced with others and previous tic symptoms may can be an important resource for information about tic return. Although involuntary, tics can be voluntarily disorders and the medications used in the treatment of suppressed for brief periods of time. This feature of TS can be confusing to parents, teachers and children alike. Children with TS may wonder why they have tics, if Pointing this out to a child like Patrick can help him they are to blame for their tics, and whether the tics will understand why his tics vary in different settings such ever go away. The nurse can provide reassurance that, as at school or at home. Stress, excitement and fatigue usually aggravate symptoms. Therefore, during tests or prior to a special field trip, new tics may emerge and Families of children with TS often recount tales of the frequency of tics may increase. Vacation times such misdiagnosis and unhelpful medical consultations. In as summer recess may be accompanied by a reduction such cases, the nurse may be able to help the family obtain an appropriate referral. When families learn about the genetic underpinnings of TS, some parents teasing from their classmates. The nurse in the school may also wonder whether they are somehow to blame setting can listen to the child and discuss better adap- for their child’s tics. Occasionally, family members tive responses than fighting to deal with the anger may reveal the presence of tics or related problems in and pain of being teased. Being an accepted member themselves or in other family members. Some parents of the group is important for all children, and this may also have a current or past history of compulsive is especially true for children with TS. Involvement behaviors. Parents with tics or obsessive-compulsive in extracurricular activities such as sports, march- symptoms may feel responsible for the child’s problems. ing band, chorus and drama club permits the child Some families may also need to express their guilt about to be an active member of a group. The nurse can having punished their child prior to understanding advocate for the child to ensure that he or she is the involuntary nature of the motor and phonic tics. not barred from these activities unnecessarily.
Recognition of these issues will enable the school nurse to be supportive to families and explain these complexities to other school personnel.
The school nurse is often relied upon as a health educa-tor for teachers and other school personnel. For chil- In many cases, children with TS will not require medi- dren such as Patrick, the nurse should inform teachers cation for tic control. However, if the tic symptoms and perhaps Patrick’s classmates about TS and the medi- interrupt intended activity, interfere with interpersonal cations used to treat his symptoms. Once the teachers relationships or school performance, medication is then and students understand the involuntary nature of tics, considered. Some medications need to be administered they may amend their view of Patrick and no longer see during school hours in which case the nurse will see the child to dispense medication. This offers an oppor- The nurse might lead a discussion with teachers tunity to evaluate both therapeutic and adverse effects on the ways in which TS can interfere in the classroom. of the medication as well as the child’s overall adapta- For example, a boy like Patrick may be expending a tion. Even in cases where medication is not dispensed significant amount of energy to suppress his tics, and in school, periodic monitoring by the school nurse can have little remaining strength to learn his multiplica- help determine whether the medication is effective and tion tables or spelling rules. Many children with TS well tolerated. The field of child and adolescent psy- have trouble with handwriting. In addition, hand or chopharmacology has greatly expanded in recent years, arm tics, or compulsive re-writing may further interfere and there are a number of new agents used in the treat- with written work. Simple solutions such as the use of a ment of TS and associated behaviors such as ADHD and tape recorder or computer can be helpful. The problems obsessions and compulsions. The proliferation of these with handwriting or direct interference from tics often agents requires continued education for health care pro- make test taking especially difficult for these students. fessionals including school nurses. Despite the prom- Adolescents with TS may be at a considerable disadvan- ise of these new medications, they can have physical, tage when taking standardized tests such as the PSAT behavioral and cognitive side effects. Finally, although or SAT. Thus, in some cases, untimed testing should be medications may be helpful, they rarely eliminate the considered. The educational team may also look to the target symptoms. (See pages 7 to 9 for a summary of school nurse to advise them concerning the impact of medications commonly used in the treatment of TS and medication on academic progress. Clearly, the nurse in the school setting has a role to play in designing ap-propriate educational strategies and perhaps classroom placement for children with TS.
include weight gain and sedation. School phobia has Medications such as haloperidol (Haldol) and pimozide also been observed. Ziprasidone does not appear to (Orap) have been used in the treatment of Tourette cause weight gain, but sedation, restlessness and insom- Syndrome for many years. These medications block specific dopamine receptors in the brain and often achieve significant reduction in tic symptoms with small doses. Early in treatment there is a small risk of Clonidine (Catapres) is an antihypertensive agent that acute dystonic reaction in which muscles of the arms is used to treat tics and/or ADHD. This medication acts and neck stiffen. Occasionally this reaction can progress on a different neurochemical system than the antipsy- to oculogyric crisis in which the neck is craned to one chotics and may take two to three months to achieve side and the eyes roll upward. Anti-Parkinsonian agents a positive response. Clonidine is begun at low doses such as benztropine (Cogentin) are used to treat these and slowly increased over several weeks. Adverse ef- side effects and may be prescribed prophylactically early fects may include sedation, which is most evident when in treatment. More common side effects may include therapy is first initiated or when the dosage is being sedation, mood changes, depression, school phobia, increased. Some children complain of dry mouth or motor restlessness, blurred vision, cognitive blunting headache and parents may report sleep problems (wak- and excessive weight gain. As with other antipsychotic ing up at night) and increased irritability. Surprisingly, medications, long-term use of haloperidol or pimozide blood pressure is rarely a problem. However, when dis- carries a small risk of developing tardive dyskinesia. continued, clonidine should be tapered slowly to avoid Despite the fact that tardive dyskinesia is also a move- a rebound increase in blood pressure, tics and anxiety.
ment disorder, there is no evidence to suggest that children with TS are at any greater risk for developing Stimulants such as methylphenidate (Ritalin) are the Direct comparison studies of pimozide and most commonly used drugs in the treatment of ADHD. haloperidol suggest that they are equally effective in Some children with TS and ADHD who are treated with controlling tics, though doses of haloperidol are typi- a stimulant may demonstrate an increase in the number, cally lower than pimozide. There have been reports intensity and frequency of tics. Because ADHD often of cardiac arrhythmias with pimozide; thus cardiac precedes the onset of tics, the tics may emerge following monitoring may be included in the treatment plan a trial of stimulant medication. Despite this chronology, of children taking pimozide. Because of their po- there is no convincing evidence that methylphenidate tential for short- and long-term side effects, use of causes a tic disorder. Moreover, several recent studies these medications is typically avoided unless the tic confirm that most children with TS can tolerate stimu- symptoms are prominent and interfere with daily liv- lants without unacceptable increases in their tics. Based ing activities. Although there may be differences in on these recent findings, many clinicians prescribe the clinical practice, the most common approach aims for stimulants and then monitor the child closely for any moderate control of tics at the lowest possible dose.
change in tic symptom severity. Stimulants may also be Risperidone (Risperdal) and ziprasidone (Geodon) used in combination with other medications such as are newer antipsychotic medications that differ from the traditional agents such as haloperidol and pimozide. As noted above, the traditional antipsychotic medications primarily block dopamine receptors. Risperidone and Although it is now clear that stimulants do not invari- ziprasidone retain this action and block serotonin recep- ably increase tics in children with TS and ADHD, some tors as well. This dual action is believed to offer protec- children do show a worsening of tics when treated with tion against the well-known neurological side effects stimulant medication. In addition, ten to twenty percent associated with traditional drugs such as haloperidol. of children with ADHD fail to respond to stimulant Both risperidone and ziprasidone have been evaluated medication. Thus, children with TS and ADHD may in carefully controlled studies in TS and both appear to be treated with a non-stimulant medication. In addi- be effective in reducing tics. The overall effectiveness tion to clonidine, four non-stimulant medications have on tic suppression appears to be equivalent to the tradi- been shown to work better than placebo in clinical tional antipsychotic drugs, but the risk of neurological trials. These include: guanfacine (Tenex), desipramine side effects is lower. Adverse side effects of risperidone (Norpramin), bupropion (Wellbutrin) and atomoxetine (Strattera). Guanfacine is an anti-hypertensive drug As indicated previously, the co-occurrence of OCD and that is similar to clonidine. As with clonidine, guanfa- TS is common. The introduction of anti-obsessional cine is usually given in multiple doses throughout the medications over the past decade is a significant ad- day. However, it may or may not be given during vancement in the treatment of OCD and several are approved for this purpose. Soon after the introduction Desipramine and atomoxetine were developed as of clomipramine (Anafranil), several more selective antidepressants. These compounds are not chemically serotonin uptake inhibitors (SSRIs) entered the market- related, but are presumed to exert primary effects on place. The SSRIs include fluoxetine (Prozac), fluvoxa- brain norephinephrine systems. Despiramine has been mine (Luvox), paroxetine (Paxil), sertraline (Zoloft), available for many years. Atomoxetine was released in escitalopram (Lexapro), and citalopram (Celexa). early 2003, and appears to be well tolerated and effec- Blocking the uptake of serotonin by the pre-synaptic tive for the treatment of ADHD. Although effective, nerve endings apparently accounts for their therapeutic many clinicians are reluctant to use desipramine be- action since other antidepressants without this property cause it has been associated with cardiac conduction are not effective in reducing obsessive-compulsive symp- problems in a small percentage of cases. Bupropion is toms. Clomipramine is a tricyclic medication, thus its also an antidepressant—but does not appear to affect side effect profile is similar to the other tricyclics such the norepinephrine system directly. Several studies as desipramine. The most common adverse effect of show that bupropion is superior to placebo for ADHD the other more selective SRIs is behavioral activation— symptoms, but the magnitude of improvement is small- characterized by motor restlessness, over-activity, mildly er than what is typically observed with the stimulants.
provocative behavior and sleep disturbance. Other adverse events may include nausea and diarrhea.
Medications Used in the Treatment of Children with Tics Brand Name
Starting Dose
Usual Dose Range
Possible Side Effects — fatigue, weight gain, muscle rigidity, motor restlessness, tardive dyskinesia, school phobias, photosensitivity, depression, cognitive dulling Possible Side Effects — same as haloperidol, EKG changes Catapres
Possible Side Effects — fatigue, drowsiness, irritability, dizziness, headache, sleep disturbance Catapres Patch
Possible Side Effects — same as clonidine tablets, localized skin rash Risperdal
Possible Side Effects — fatigue, weight gain, depressed mood, school phobia Possible Side Effects — sedation, restlessness, insomnia Note: The other newer anti-psychotics — olanzapine (Zyprexa™), quetiapine (Seroquel™), and aripiprazole (Abilify™) have not been well-studied in TS to date.
Brand Name
Starting Dose (per day)
Usual Dose Range (per day)
Possible Side Effects — hyperactivity, restlessness, insomnia, disinhibition Possible Side Effects — same as fluoxetine, weight gain Anafranil
Possible Side Effects — dry mouth, blurred vision, constipation, fatigue, EKG changes, weight gain Possible Side Effects — same as fluoxetine, weight gain Possible Side Effects — same as fluoxetine Possible Side Effects — same as fluoxetine Note: A new selective serotonin reuptake inhibitor, escitalopram (Lexapro) has not been well-studied in OCD.
Brand Name
Starting Dose (per day)
Usual Dose Range (per day)
Wellbutrin
Possible Side Effects — dry mouth, blurred vision, constipation, fatigue, EEG changes, weight gain Norpramin
Possible Side Effects — drowsiness, tachycardia, dizziness, dry mouth, constipation Possible Side Effects — fatigue, drowsiness, dizziness, sleep disturbance Catapres
Possible Side Effects — fatigue, drowsiness, irritability, dizziness, headache, sleep disturbance Strattera
Possible Side Effects — decreased appetite, weight loss, abdominal pain, vomiting, dizziness Usual Dose Range
Brand Name
Starting Dose (per day)
(per day)
Duration
Ritalin, Concerta, Metadate
Possible Side Effects — appetite loss, insomnia, irritability, increased tics, headache, stomach ache Concerta
Metadate CD
Ritalin-LA
Possible Side Effects — same as methylphenidate Dexedrine
Possible Side Effects — same as methylphenidate Adderall
Possible Side Effects — same as methylphenidate Adderall XR
Possible Side Effects — same as methylphenidate SummaryTics are common in school-age children. The presence complexities of TS—especially with respect to which of tics does not necessarily mean that the child will behaviors are part of the syndrome and which behaviors develop TS. Tourette Syndrome is a neurological disor- the child may be expected to control. Although this der characterized by motor and phonic tics, and in some distinction may not be straightforward in some cases, cases, associated symptoms of OCD and/or ADHD. The careful discussion can usually lead to appropriate limit tics of TS are chronic with a tendency to wax and wane setting. In order to carry out this educational role, the in severity over time. TS is not a progressive condi- nurse in the school setting must keep up with current tion. Indeed, in most cases, tics decline after puberty. knowledge about TS and its related conditions. This is Although the cause is unknown, dysregulation of brain especially critical regarding the medications used in TS circuits involving frontal lobe and the basal ganglia ap- pears to be important in the pathophysiology of TS.
As with other chronic conditions, the child with Research over the past two decades suggests that TS often needs additional support and understanding. TS is a genetic disorder with a broad range of expres- The student should be allowed, and indeed encour- sion from mild to severe. The TS phenotype appears aged, to participate in school activities. In the process of to include obsessive-compulsive symptoms. Problems monitoring the child’s medication in the school setting, with attention, impulsiveness, hyperactivity and anxiety the nurse should also monitor the child’s overall adjust- regulation are also common in clinical samples of chil- ment to having a chronic condition. The nurse may dren with TS, and may be the source of greater impair- hear about teasing from classmates, apprehension about having tics during an upcoming school event, academic Children with TS may be subjected to teasing by troubles, or fears of blurting out inappropriate com- peers and, sometimes, disparagement by uninformed ments in the classroom. Allowing the child to express teachers and family members. Some children require these concerns may help to reduce their impact. In medication to help with tics, ADHD and/or OCD. The other cases, the school nurse can refer the child within nurse in the school setting is in a unique position to the school or to outside health care providers. Thus, the monitor the child’s condition and treatment response. school nurse can play an important role in the direct The nurse can help school personnel to understand the and indirect care of students with TS.
Sources for additional informationKeltner, N & Folks, D; Psychotropic Drugs; St. Louis, Mosby; 2001Leckman, JF & Cohen, DJ (eds); Tourette Syndrome: tics, obsessions and compulsions; New York; Wiley; 1999Martin, A, Scahill, L, Charney, DS, Leckman, JF; Pediatric Psychopharmocology: Principles and practice; New York; Ox-ford University Press; 2003 OC Foundation website: www.ocfoundation.org Associate Professor of Nursing and Child Psychiatry at Yale University Child Study Center and School of Nursing.
Formerly an Associate Research Scientist, Clinical Nurse Specialist, Yale Child Study Center, Lecturer, Dept. of Public Health, Yale School of Medicine.
TSA gratefully acknowledges the counsel and guidance of its Medical Advisory Board in the review of this publication. Members of the TSA Medical Advisory Board welcome queries from colleagues and other professionals and can be reached by contacting the Tourette Syndrome Association.
This publication is intended to provide information about Tourette Syndrome, its management and the medications currently in use. Readers should always consult their physicians concerning all treatments and medications.
Permission to reprint this publication in any form must be obtained from the national AV-9 After the Diagnosis . . . The Next Steps Produced expressly for individuals and families who have received a new diagnosis of TS. This video was developed to help clarify what TS is, to offer encouragement, and to dispel misperceptions about having TS. Features several families in excerpts from the Family Life With TS A Six-Part Series who recount their own experiences as well as comments from medical experts. Narrated by Academy Award Winner Richard Dreyfuss. 35 min.
AV-10 The Complexities of TS Treatment: A Physicians’ Roundtable Three internationally recognized TS experts, Drs. Cathy Budman, Joseph Jankovic and John Walkup provide colleagues with valuable information about the complexities of treating and advising families with TS. Emphasis is on different clinical approaches to patients with a broad range of symptom severity. Co-morbid and associated conditions are covered. 15 min.
AV-10a Clinical Counseling: Towards an Understanding of Tourette Syndrome Targeted to counselors, social workers, educators, psychologists and families, this video features expert physicians, allied professionals and several families summarizing key issues that can arise when counseling families with TS. Includes valuable insights from the vantage point of those who have TS and those who seek to help them. 15 min.
AV-11 Family Life With Tourette Syndrome . . . Personal Stories . . . A Six-Part Series Adults, teenagers, children, and their families . . . all affected by Tourette Syndrome describe lives filled with triumphs and setbacks . . . struggle and growth. Informative and inspirational, these stories present universal issues and resonate with a sense of hope, possibility, and love. 58 min.
AV-12 A Teacher Looks at Tourette Syndrome Susan Conners presents a humorous and inspiring program to help teachers be effective and informed when teaching a child with TS. Susan introduces teachers to what it is like to have a student with TS in their classroom and gives techniques that help students learn best. Susan’s years of teaching experience, personal insight and abundant humor make for compelling viewing. 30 min. and 60 min. presentations on the same video.
and Videos can be obtained by contacting:

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