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Adolescent-Onset Schizophrenia: 1 in Every 100 Young People

Schizophrenia is astoundingly common – the experts say it strikes one out of every one hundred people, and the most common time for it to strike is when a child has just reached his mid to late teens, or sometimes his early 20’s.  Just when a child’s future is opening up to him, this devastating illness can rob him of his ability to think clearly, and subject him to a future of hallucinations, delusions, and an inability even to organize his daily life.  But the good news is that – unlike schizophrenia that strikes in very early childhood – the adolescent-onset variety is frequently highly treatable, and young people have a greater likelihood of fully regaining their lives.  But it’s up to their families to act quickly and decisively – to recognize the symptoms, and be relentless in getting and maintaining the expert treatment their children need.  Learn how that’s done, on this memorable episode of Keeping Kids Healthy.


GUESTS:

Jasper Shapiro -  young man who developed schizophrenia as a teen
Alison and Jody Shapiro - Jasper’s Parents
Edward - young man who developed schizophrenia as a teen
Salwa and Robert - Edward's Parents
Fiona - Edward's Sister
Keith Duclos - President of "Side by Side Supported Living" in Brookline, MA; Edward's Case Manager 
Judith Rapoport, MD - Chief, Child Psychiatry Branch, National Institute of Mental Health;
She is an elected member of the Institute of Medicine and a Fellow of the American Academy of Arts and Sciences. Dr. Rapoport's laboratory investigates the clinical phenomenology, neurobiology and treatment of psychiatric disorders in children, including Childhood Onset Schizophrenia, Attention Deficit Hyperactivity Disorder and Obsessive Compulsive Disorder.
Elizabeth Pappadopulos, PhD - Clinical Psychologist; Center for the Advancement of Children’s Mental Health; Assistant Professor of Clinical Psychology (In Psychiatry)
Department of Psychiatry, Columbia University College of Physicians and Surgeons; Assistant Professor & Director for the Medication Best Practices Program, Department of Psychiatry, New York State Psychiatric Institute/Columbia University College of Physicians and Surgeons, New York, NY
Dr. Jeffrey Lieberman - Director, NYS Psychiatric Institute at Columbia University Medical Center; Chairman and Lieber Professor of Psychiatry, directs the Lieber Center for Schizophrenia Research; Lawrence E. Kolb Chairman of Psychiatry at the Columbia University College of Physicians and Surgeons; Director of the New York State Psychiatric Institute; Publications:    "Psychiatry" textbook; "Comprehensive Care of Schizophrenia"; "Ethical Issues in Psychiatric Research: A Research Manual on Human Subjects Protection"; "Psychiatric Drugs"

BACKGROUND:

What Is Schizophrenia?
Schizophrenia is a severe, chronic, and disabling brain disease that affects approximately 1 percent of the world's population,. Contrary to the popular misconception, people with schizophrenia do not have a "split" personality.  Rather, they experience severe mental disturbances in which normal thoughts, speech, and behavior are disrupted.  Schizophrenia researchers generally believe the illness is caused by a combination of genetic and environmental factors, and that, in people with a genetic predisposition, the likelihood of schizophrenic episodes can be increased or triggered by the use of street drugs, including marijuana.

Most people who develop schizophrenia exhibit the first symptoms of the disease in their teens or early twenties.  The symptoms can include visual or other sensory hallucinations, or delusions (see details below), but the disease can also manifest itself by more subtle symptoms such as unusual emotional flatness or lack of expression, or a marked withdrawal from interaction with others, a significant disorganization of thought, or an inability to successfully engage in the kind of  planning necessary to effectively organize one’s everyday life.  Some families in Keeping Kids Healthy’s schizophrenia shows reported symptoms that appeared to be similar to those of ADHD; in some cases, in adolescents, they saw evidence of drug use or drinking (often part of an effort at self-medication by an affected teen), or severe trouble in school.
A much smaller percentage of people develop symptoms of schizophrenia before age 13, sometimes as early as age 7.  When a child develops psychiatric symptoms before he or she turns 13, it is called Childhood-Onset Schizophrenia.  Researchers believe that the genetic component of the illness plays a bigger role in such early-onset schizophrenia than it does in adolescent- or adult-onset varieties of the disease.  These children also show greater evidence of abnormal brain development, including loss of gray matter in the brain.  Childhood-onset schizophrenia is generally more difficult to treat than is schizophrenia that comes on later in life, and doctors at the National Institute of Mental Health say that in general, the children tend to become, and often stay, more severely ill than is the case with those who develop adolescent-onset schizophrenia.  In a prior episode of Keeping Kids Healthy we focused on the Childhood-Onset variation of schizophrenia; you can find additional details about that form of the illness if you click on the Keeping Kids Healthy  web page devoted to Childhood-Onset Schizophrenia.
With either form of the illness, early diagnosis and treatment (generally including the use of medication) are extremely important.  In adolescent-onset schizophrenia there are indications that early, proper treatment can prevent some of the progressive damage that can otherwise take place if the disease remains untreated and the patient continues to have uncontrolled schizophrenic episodes. Schizophrenia is a life-long disease that can be controlled but not cured.  However, according to Dr. Jeffrey Lieberman of the New York State Psychiatric Institute at Columbia University Medical Center, “We know now that if you treat people early and effectively, you can produce good levels of response and, in many cases, a full recovery, assuming that we can convince people to remain in treatment indefinitely.”

Symptoms of Schizophrenia  (in general)
The symptoms of schizophrenia fall into three main categories:
  • Positive symptoms, including unusual thoughts or perceptions that include hallucinations (disturbances of sensory perception, such as "seeing things" or "hearing things"), delusions (false beliefs, such as the belief that people are reading their thoughts or plotting against them,) and thought disorder (one mother described it as though the child had "a blender running in his brain").  Disorganization of thought is sometimes listed under the category of "cognitive symptoms," below.
  • Negative symptoms, including a loss or a decrease in the ability to initiate plans, speak, or interact with others (there may be a withdrawal from interaction), emotional flatness or lack of expression, speech that is brief and devoid of content, or an inability to find pleasure in everyday life. ("Negative" does not refer to a person's attitude but to a lack of certain characteristics that should be there.)  These symptoms are harder to recognize as part of the disorder and can be mistaken for laziness or depression.
  • Cognitive symptoms (or cognitive deficits), including problems with attention, certain types of memory, and the executive functions that allow us to plan and organize our everyday lives. Cognitive deficits can also be difficult to recognize as part of the disorder but are the most disabling in terms of leading a normal life.


Symptoms of Childhood-Onset Schizophrenia
For a detailed list of symptoms of Childhood-Onset Schizophrenia, see the Keeping Kids Healthy web page devoted to that condition. Click here...

Treatment for Schizophrenia
(Source: NARSAD-The Mental Health Research Association-see resource information below)
 "Treatment is aimed at reducing symptoms and preventing psychotic relapses and is believed to be most effective when begun early in the course of the illness. Schizophrenia is usually treated with antipsychotic medication. Once acute symptoms have lessened, a combination of medicine and psychosocial/rehabilitation interventions can be beneficial. Because schizophrenia is a chronic condition, disease management is a life-long process."


RESOURCES:

NARSAD - The Mental Health Research Association
http://www.narsad.org/
Infoline: 1-800-829-8289
60 Cutter Mill Road, Suite 404
Great Neck, New York 11021 USA    
1-800-829-8289   
NARSAD supports research programs and provides educational symposia and free online publications about mental illness.  Its web site provides summaries and links to the latest news and research developments related to schizophrenia and other psychological disorders, as well as basic information  about each of the conditions and free downloadable fact sheets.  The NARSAD telephone information line (Infoline) answers basic questions about the symptoms, causes and treatments of psychological illnesses and provides information about support groups and other mental health organizations.

Schizophrenia.com
www.schizophrenia.com/index.php
The website, a project of NARSAD (see below), is a non-profit web community dedicated to providing high quality information, support and education to the family members, caregivers and individuals whose lives have been impacted by schizophrenia.  There are chats, discussions, research, blogs, and resources for parents and siblings of schizophrenic children.

Mental Health America
www.mentalhealthamerica.net/index.cfm?objectId=C7DF8F81-1372-4D20-C84C5539FAB14576
Phone:  (703) 684-7722
2000 N. Beauregard Street
6th Floor Alexandria, VA 22311
This is a non-profit organization dedicated to helping people live mentally healthier lives.  They advocate for mental health as a public health and social justice issue, educate the public about ways to preserve and strengthen its mental health, fight for access to effective care and an end to discrimination against people with mental and addictive disorders; foster innovation in research, practice, services and policy; and provide support to the 60+ million individuals and families living with mental health and substance use problems.

National Alliance on Mental Illness (NAMI)
http://www.nami.org/
Helpline:  800.950.6264
Main: 703-524-7600
2107 Wilson Blvd., Suite 300
Arlington, VA 22201-3042
info@nami.org
NAMI is the nation's largest grassroots mental health organization dedicated to improving the lives of persons living with serious mental illness and their families. Founded in 1979, NAMI has organizations in every state and in over 1100 local communities across the country, who join together to meet the NAMI mission through advocacy, research, support, and education.  Their website contains information on illnesses, research, and support.

Child Psychiatry Branch, National Institute Of Mental Health
Information about Studies in which your child can participate can be found at:
http://patientinfo.nimh.nih.gov/SchizophreniaPediatric.aspx
or:
http://intramural.nimh.nih.gov/chp/index.html
1-888- 254-3823
The doctors from the Child Psychiatry Branch of the National Institute of Mental Health, who appeared in this episode of Keeping Kids Healthy, conduct research on the diagnosis, treatment, and neurobiology of childhood psychiatric disorders.  Brain imaging, genetic, and drug-treatment studies are ongoing for childhood-onset schizophrenia. 

American Academy of Child and Adolescent Psychiatry
http://aacap.org/cs/root/facts_for_families/schizophrenia_in_children
Phone:  202.966.7300
3615 Wisconsin Avenue, N.W.
Washington, D.C.20016-3007
The AACAP website lists important facts about schizophrenia and other mental illnesses in children; it is also a good resource for finding a child or adolescent psychiatrist.

The North American Society for Childhood Onset Schizophrenia (NASCOS)
www.nascos.org/Home
88 Briarwood Drive East
Berkeley Heights, NJ 07922
E-mail:  info@nascos.org
NASCOS is a non-profit, internet-based group formed to provide a Web site devoted solely to childhood onset schizophrenia (COS).  Families, caregivers and medical professionals will be able to locate and contact each other in order to access and share information related to this rare, devastating disease. Founded by Ed Orton and Karen Sniezek, parents who appeared on this episode of Keeping Kids Healthy, this website provides numerous links to  helpful sites about "C.O.S.," Childhood-Onset Schizophrenia.