AN OVERVIEW
Prepared for NAPAS by
Center for Public Representation
Northampton, Massachusetts
The Surgeon General has estimated that 11% of children between ages 9 and 17 have adiagnosable mental or addictive disorder with significant functional impairment. (See footnote 5) Mental illnesslabels are common throughout the systems which serve children. For example, some studiesindicate that between 77% and 93% of juvenile offenders have been diagnosed with a mentalillness. In fact, another study found that 63% of incarcerated juveniles had two or more diagnosesof mental illness. (See footnote 6) Likewise, P&A staff often encounter children with developmental disabilitieswho have been prescribed antipsychotics and many special needs students are taking medications.
Despite the increased use of medications with young people, few if any of the commonlyused medications for mental illness are approved for use with children. (See footnote 7) In part because of thethorny informed consent and other ethical issues which attend any research with minors, therehave been very few controlled clinical trial of the medications' effects on children. Therefore,relatively little is know beyond what may be learned from clinical observations. (See footnote 8)
There is little dispute that effective treatment and intervention programs for adolescentsare those that simultaneously address multiple risk factors, are tailored to the individual child, aresufficient in duration, maintain high standards and are implemented by qualified staff. Communitybased programs are generally more effective. (See footnote 9) Medication alone is seldom the answer todifficulties experienced by young people, and in a fully realized program it may not be necessary.Nevertheless, it is inevitable that medication will be at least part of the treatment plan for many ofa P&A's young clients.
This paper will alert advocates to issues which may arise in the representation of childrenfor whom medication is being recommended or administered. P&A advocacy on behalf ofchildren and adolescents will be enhanced if advocates are familiar with the most commondiagnoses and medications. The discussion in this paper should not be interpreted to imply thatthe author and the National Association for Protection and Advocacy Systems necessarily agreewith or endorse the diagnostic and treatment concepts described. Diagnostic labels and othermedical terms are used throughout the paper because the clinicians who are prescribing themedications and the providers who supply the services to P&As' young clients use and rely onthem.
A. Some common diagnoses.
According to Dr. Gordon Harper, a Massachusetts child psychiatrist who has written aninformative article on pediatric psychopharmacology, (See footnote 10) medication recommendations should bepart of a comprehensive treatment plan, arrived at after a full assessment. The assessment shouldinclude identification of current symptoms, assessment of current functioning, consideration of developmental history, history of abuse or neglect, and may include psychological testing and,occasionally, various lab tests. Family history and an evaluation of the current family situation arealso important. Of course, the assessment should recognize and respond appropriately to theculture of the child and the family. These assessment and others usually lead to a diagnosis.Although he suggests that clinicians focus on “target symptoms,” Dr. Harper believes that adiagnosis is helpful “for understanding the nature of the patient's problems and [his or her] likelyresponse to treatment.” (See footnote 11)
A list of some common diagnoses of children and adolescents follows. This list is notintended to be exhaustive nor to describe any diagnosis in detail. It is intended only to alertadvocates to some of the clinical terms which may be used to describe their young clients.Advocates will also find it useful to refer to the Diagnostic and Statistical Manual IV (DSM IV),published by the American Psychiatric Association. As its name implies, the DSM is the standarddiagnostic manual for psychiatrists and other mental health professionals.
Conduct disorder is a common diagnosis among adolescents. Conduct disorders are saidto be characterized by the persistent violation of age-appropriate societal norms; symptomsinclude aggression, destruction of property, running away and theft. (See footnote 12) Although the DSM IVnotes a prevalence range of from less than one percent to more than ten percent in the generalpopulation, studies have indicated that as many of 90% of incarcerated juveniles have a ConductDisorder diagnosis. (See footnote 13) Furthermore, “conduct disorders” are reportedly found in between one-thirdand one-half of children with an Attention Deficit Hyperactivity Disorder (ADHD) diagnosis.Conduct disorder is often treated without medication, as it is frequently viewed by clinicians andservice providers in the context of and as part of the child's living conditions. (See footnote 14)
Oppositional Defiant Disorder (ODD) is said to be a recurrent pattern of negative, defiant,disobedient and hostile behavior toward authority figures. (See footnote 15) Physical aggression, which could be asymptoms of Conduct disorder, is apparently not usually a symptom of ODD.
ADHD has been the object of considerable media and Congressional attention in the pastseveral years. ADHD is said to be characterized by a persistent pattern of forgetfulness,disorganization, hyperactivity, impulsivity, poor school performance, and poor socialrelationships. (See footnote 16) A consensus statement developed by the National Institutes of Health concludedthat ADHD is a valid disorder. (See footnote 17) Dr. Harper suggests that “[w]hile typical ADHD symptoms inschool age children...resemble normal behavior of younger children,” ADHD is “different fromnormal behavior and children with ADHD are at increased risk for academic, social, and legalproblems.” (See footnote 18) However, a child who is hungry, or abused, or is in an inappropriate school program,may also have difficulty concentrating and attending to school work. Therefore, Dr. Harpersuggests that the “possible role of ADHD, when these other problems are present, must becarefully assessed and neither assumed nor excluded too easily.” (See footnote 19) Others disagree entirely. Thesecritics, including Dr. Peter Breggin, argue that the ADHD diagnosis was created to “redefinedisruptive classroom behavior into a disease,” and that the medications are prescribed “when[children] are in conflict with the expectations or demands” of their parents and teachers. (See footnote 20)
Depression and depressive disorders (See footnote 21) are now more commonly diagnosed amongadolescents. Some researchers feel that depression is under diagnosed, estimating that fewer than20% of children with major depression get treatment for it. (See footnote 22) On the other hand, another expertclaims that nearly 50% of children with depression diagnoses actually have a bi-polar disorder. (See footnote 23) Bi-polar disorder is a controversial diagnosis in children. According to Dr. Harper, “[c]liniciansdisagree about the criteria to be used in making this diagnosis.” He further points out that“[i]nappropriate use of the diagnosis may both expose the child to unwarranted medication andmay undercut the child's efforts at self-understanding and self-management.” (See footnote 24)
Children who have been abused may be diagnosed with post-traumatic stress disorder(PTSD). (See footnote 25) PTSD is believed to be a response to extreme traumatic stress, which could includeactual or threatened serious injury or other threat to one's personal integrity. Symptoms inchildren may include withdrawal, extreme fragility, behavioral outbursts and even “hearingvoices.”
Some young people may be diagnosed with anxiety disorders (which could include panicdisorder, obsessive compulsive disorder [OCD] and social phobia), with pervasive developmentaldisorders (PDD) (See footnote 26) such as autism or Asperger's syndrome, or with thought disorders such asschizophrenia. Children with any of these diagnoses may have medication recommended forthem.
B. When and what medications are prescribed
Physicians suggest that medication can help some children with disturbances of mood,attention, anxiety symptoms, some impulse control problems and confused thinking andperceptions. (See footnote 27) However, the same symptom may be indicative of many different diagnosticdisorders and the medication recommended for one diagnosis may be quite different than that foranother with some of the same symptoms. Of course, the medications may have side-effects, someof which can be quite serious. (See footnote 28) Also, medication may be less effective in situations of householdstress, where there may be inconsistent administration of the drugs and inadequate monitoring oftheir effects.
P&A advocates should have a basic familiarity with the medications commonly prescribedfor their child and adolescent clients. Several classes of medications are currently in use foryoungsters with diagnoses of emotional disturbance or mental illness . A very short summary ofsome of the most common classes and their indications follows. The summary is based onliterature which is accepted by a majority of clinicians. There is also an important and substantialbody of literature which takes a contrary view, asserting that the medications are less effective andmore dangerous than their proponents believe. (See footnote 29) P&A advocates should consult with a physicianand review the relevant medical literature for more detail.
Psychostimulants, such as Ritalin and Cylert, are commonly prescribed for ADHD.Although called stimulants, they are reported to “inhibit[] the dopamine transporter.” (See footnote 30) Somestudies indicate that children older than five who take such medications are less impulsive, restlessand distractable, better able to hold important information in mind and to have better self- control. (See footnote 31) Many parents of children who take Ritalin find it to be a very effective intervention.Nevertheless, Ritalin is a controversial medication. Critics decry estimates that perhaps as many as5 million school children are taking stimulant drugs for ADHD, and that perhaps as many as 15%of all elementary and secondary school boys are taking the medications. (See footnote 32) Cylert has a risk of liverfailure. Ritalin has possible side effects which include loss of appetite, growth retardation and tics.Ritalin may also be abused.
There are several kinds of antidepressants. Tricyclic antidepressants (TCA), like Tofraniland Elavil, though commonly used with adults, have apparently not been shown to be successfulin treating children with depression. Although sometimes used for ADHD, the side effects risk areconsidered serious enough to remove them from the “first line” of treatment. Specific SerotoninReuptake Inhibitors (SSRIs), such as Prozac, Zoloft and Paxil, are being prescribed more oftenfor children for depression, obsessive compulsive symptoms (OCD) and selective mutism. Themanufacturers of Paxil and related medications acknowledge that side effects may includeagitation, hostility, suicidal ideation, and delusion, but state that these side effects occur in lessthan one percent of people taking the drugs. (See footnote 33) Anafranil, also an SSRI, is apparently used only forOCD. SSRIs are expensive, they may have sexual side effects and may cause agitation or mania. (See footnote 34) Other antidepressants such as Wellbutrin are sometimes prescribed for depression and for ADHD.Monoamine Oxidase Inhibitors (MAOIs) have apparently been considered too risky for use withchildren.
Mood stabilizers, such as Lithium, Tegretol and Depakote, may be prescribed if the childis diagnosed with bipolar disorder.
Antipsychotics are used with children as well as adults. It appears that the “secondgeneration” or “atypical antipsychotics” (such as Clozaril and Risperdal) are more commonly usedwith children and adolescents than are the more traditional medications (such as Thorazine,Mellaril and Stelazine). The newer drugs are reported to cause fewer extrapyramidal (See footnote 35) symptomsand to have a lower risk of Tardive Dyskinesia. (See footnote 36) However, they have other serious side-effects,including weight gain (sometimes substantial), sedation, and with Clozaril, agranulocytosis. (See footnote 37) Theliterature suggests that antipsychotics may be effective with children diagnosed with schizophreniaand schizoaffective disorders, for depression with psychotic features, for Tourette's Disorder, andfor aggressive behavior. Use of more than one medication at a time is not unusual and is increasing. (See footnote 38)
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E. What advocates and family members may want to ask doctors who are recommendingpsycho-pharmacological treatment.
Advocates discussing treatment recommendations with physicians or making anassessment of a treatment recommendation, will want to examine the rational for therecommendation. The following questions, may be helpful to advocates and their clients. Thesequestions are not exhaustive, but rather are offered as a starting place for thinking about theappropriateness of a recommendation. (See footnote 39)
1. How long has the doctor been the treating psychiatrist for the child?
2. How often does the doctor see the child? For how long?
3. With whom has the doctor consulted about the child?
4. What is the diagnosis?
5. What are the child's symptoms which are consistent with that diagnosis?
6. How recently has the child exhibited these symptoms?
7. In what settings does the child experience the most difficulty?
8. Is there any threat of harm by the child to others?
9. Is there a threat of suicide? What is the threat?
10. Is there a threat of or self-harm? If so, what kind of self-harm?
11. What medication has the child taken in the past? What has been the impact of thatmedication?
12. What medication is the child taking now? If the doctor is recommendingdiscontinuation of a medication, what is the reason for that recommendation?
13. What medications are being recommended?
14. What symptoms are each of the medications intended to target? 15. How will each of the medications be administered?
16. In what dosage will the medications be administered?
17. What is the rationale for recommending that dosage?
18. For each medication, what is the time frame for assessing effectiveness? How willeffectiveness be monitored and who will be responsible for the monitoring?
19. What is the prognosis with each medication?
20. What is the prognosis without each medication?
21. What are the side-effects of each medication and what is the likelihood of occurrenceof each side-effect? How will the child be monitored for side-effects? Are “drug holidays”recommended?
22. Are there any possible interactions of one recommended medication with any othermedication the child may be taking?
23. Are the recommended medications approved by the FDA for the proposed use withchildren? If not, are the medications commonly used for this purpose with children?
24. What therapies, services and interventions are recommended in addition tomedications? What problem is each of the interventions designed to address?
25. What will happen if the child is inconsistent in taking the medication?
26. What will happen if the child uses alcohol or illegal drugs while taking therecommended medications?
27. Has the doctor discussed the medication with the child? If not, why not?
28. If the doctor has discussed the recommended medications with the child, what is thedoctor's assessment of the child's ability to understand the recommendation and to make adecision about it?
29. What has the child told the doctor about his or her wishes regarding the medication?
30. What social, family and environmental supports are available to the child during theperiod of treatment?
31. What alternatives are there to the use of medication? If those alternatives have beenrejected, what is the basis for that decision?
32. What should happen if the child's place of residence changes during the course oftreatment?
Footnote: 1 Julie Mango Zito, Daniel J. Safer, Susan desReis, James F. Gardner, Myde Boles,Frances Lynch, Trends in the Prescribing of Psychotropic Medications to Preschoolers, 283 J.Am. Med. Assn. 1025, 1025 (2000)(hereafter Zito).
Footnote: 2 Id.
Footnote: 3 Zito, supra n. 1.
Footnote: 4 For the White House's description of the press conference and the initiatives Mrs.Clinton announced, see <<http://www.hhs.gov/news/press/2000pres/2000320.html>>.
Footnote: 5 U.S. Department of Health and Human Services, Mental Health: A Report of theSurgeon General (1999).
Footnote: 6 Frances Lexcen & Richard E. Redding, Mental health Needs of Juvenile Offenders,Institute on Law Psychiatry, & Public Policy, University of Virginia, p. 10, available at<<http://ness.sys.virginia.edu/juv/MHneeds.html>> (hereafter Lexcen).
Footnote: 7 Ritalin, frequently prescribed for children with attention deficit disorders, is an exception.
Footnote: 8 Since the FDA has not approved most of the medications for children, they areprescribed “off label.” Of course, in most cases, physicians are free to prescribe medications inthis manner. Without controlled studies, clinicians must rely on clinical experience to guide theirprescription practices. The lack of controlled trials also means that the long term effects of themedications when they are administered in childhood are unknown.
Footnote: 9 See, e.g., Richard E. Redding, Characteristics of Effective Treatment and Interventionsfor Juvenile Offenders, Institute on Law, Psychiatry and Public Policy, University of Virginia,available at <<http://ness.sys.Virginia.edu/juv/Characteristics.html>>.
Footnote: 10 Gordon Harper, Psychopharmacotherapy for Children in Massachusetts, in R. MarcKantrowitz, 2001 Massachusetts Juvenile Law Sourcebook, 527, 530 (2001) (hereafter Harper).
Footnote: 11 Id., p. 531.
Footnote: 12 See DSM IV pp. 93-99. Of course, some question the diagnosis and consider these“symptoms” to be relatively common, though socially unacceptable, adolescent behavior.
Footnote: 13 Molly Brunk, Effective Treatment of Conduct Disorders, Juvenile Justice Fact Sheet,Institute of Law, Psychiatry, and Public Policy, University of Virginia (2000) (hereafter Brunk).
Footnote: 14 Lexcen, p.3. See also, Brunk.
Footnote: 15 DSM IV, p. 100 - 102.
Footnote: 16 DSM IV, pp. 85-93.
Footnote: 17 Diagnosis and Treatment of Attention Deficit Hyperactivity Disorder (ADHD), NIHConsensus Statement, Vol. 16, No. 2, (November 16 - 18, 1998).
Footnote: 18 Harper, p. 534.
Footnote: 19 Id.
Footnote: 20 Peter R. Breggin, MD, Testimony to the Subcommittee on Oversight and Investigations,Committee on Education and the Workforce, U.S. House of Representatives, September 29,2000. Available at <<http://www.breggin.com/congress.html>>.
Footnote: 21 DSM IV, pp. 369 ff.
Footnote: 22 Nancy Shute, Toni Locy and Douglas Pasternak, The Perils of Pills, U.S. News &World Report, cover story, March 6, 2000 available at<<http://www.usnews.com/usnews/issue/000306/kids.htm.>>.
Footnote: 23 Id.
Footnote: 24 Harper, p. 535.
Footnote: 25 DSM IV, p. 463.
Footnote: 26 DSM IV, pp. 69 ff.
Footnote: 27 Harper, p. 527.
Footnote: 28 A Massachusetts Juvenile Court Judge has told of a petition before her seeking tochange the court approved medication for a youth from a traditional to an atypical antipsychotic.When she asked why a change was needed, she was told that the boy had Tardive Dyskinesia. Hewas 8 years old.
Footnote: 29 See, e.g., Peter R. Breggin, Toxic Psychiatry: Why Therapy, Empathy, and
Love Must Replace the Drugs, Electroshock, and Biochemical Theories of the “New Psychiatry”
(1994).
Footnote: 30 Russell A. Barkley, Attention-Deficit Hyperactivity Disorder, Scientific American, Sept1998, <<http://www.sciam.com/1998/0998issue/0998barkley.html>>, p. 7.
Footnote: 31 Id.
Footnote: 32 See, e.g., Peter R. Breggin, Talking Back to Ritalin: What Doctors Aren't Telling YouAbout Stimulants for Children (1998).
Footnote: 33 However, some reports claim that 1.5 million children in the United States take Paxil orrelated drugs. If each of the four side-effects occur only in 0.25 % of the children who take them,15,000 young people are at risk.
Footnote: 34 The debate about whether these medications actually cause violence is beyond the scopeof this paper. See, Cover Story, Can Drugs Spark Acts of Violence?, U.S. News & World Report,March 6, 2000 <<http://www.usnews.com/usnews/issue/000306/kids.b3.htm>>.
Footnote: 35 Extrapyramidal effects include akathisia (e.g., restlessness, an inability to sit still),akinesia (e.g., rigidity, stiffness, shuffling gait), and tremor (shaking, usually of the hands andfingers).
Footnote: 36 Tardive Dyskinesia is an extrapyramidal effect which includes involuntary smacking ofthe lips, sucking movements, tongue rolling, and grimaces.
Footnote: 37 Agranulocytosis is a condition in which the bone marrow stops producing white bloodcells. Regular periodic blood tests are essential for people taking medication which may cause thisreversible condition.
Footnote: 38 Timothy E. Wilens, Thomas Spencer, Joseph Biederman, Janet Wozniak, DanielConnor, Combined Pharmacotherapy: An Emerging Trend in Pediatric Psychopharmacology, 34J. Am. Acad. Child Adolesc. Psychiatry 110 (1995).
Footnote: 39 The questions are informed by the work of Robert Kinscherff, Ph.D., J.D., Director ofJuvenile Court Clinical Service, Massachusetts Juvenile Court Department.
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