Synopsis
Book by Papolos MD Demitri Papolos Janice
Extrait
Voices from the Front
In 1992 Tomie Burke, a young mother in Pullman, Washington, developed a listserv (called BPParents) for parents of children with bipolar disorder. She was motivated to do so because when her six-year-old son first began experiencing the baffling and frightening symptoms of the illness, she searched community and university libraries, bookstores, databases, and Internet pages in her desperate desire to become educated about the illness and to help her child. She found little to check out, purchase, or download.
But eventually she did become extremely knowledgeable about the illness, and she wanted to reach out to other families--to provide information and assure them that they were not alone. She soon had an address on the World Wide Web called Parents of Bipolar Children. The site consisted of a home page, links to information about the disorder, and a guest book where parents could describe how they found the site, note whether they had a boy or girl with a diagnosis of bipolar disorder, and comment a bit about their situations.
The messages left by parents who visited convey a desperate need for information and sheer relief when they discover that they are not alone-that the illness is not uncommon and that it isn't caused by bad parenting. That first year thousands of parents came to the site seeking help for their children.
What is early-onset bipolar disorder, and why is it such a little-known illness? Most people have never heard of the expression, but it is actually psychiatry's phrase for manic-depression that occurs early--very early--in life. (Adults who used to be diagnosed manic-depressive are now also referred to as having bipolar disorder.)
Bipolar disorder in children is a neglected public health problem. It is estimated that one-third of all the children in this country who are being diagnosed with attention-deficit disorder with hyperactivity are actually suffering from early symptoms of bipolar disorder. Since close to 4 million children were prescribed stimulants such as Ritalin in 1998, that's over 1 million children who eventually will be diagnosed as bipolar. According to the American Academy of Child and Adolescent Psychiatry, a third of the 3.4 million children who first seem to be suffering with depression will go on to manifest the bipolar form of a mood disorder. Researchers in the field of early-onset bipolar disorder peg that figure closer to 50 percent. Amid all the dry statistics stand several million suffering children as well as their mothers, fathers, brothers, sisters, and grandparents.
This illness is as old as humankind, and has probably been conserved in the human genome because it confers great energy and originality of thought. People who have had it have literally changed the course of human history: Manic-depression has afflicted (and probably fueled the brilliance of) people like Isaac Newton, Abraham Lincoln, Winston Churchill, Theodore Roosevelt, Johann Goethe, Honoré de Balzac, George Frederic Handel, Ludwig von Beethoven, Robert Schumann, Leo Tolstoy, Charles Dickens, Virginia Woolf, Ernest Hemingway, Robert Lowell, and Anne Sexton.
But until recently, manic-depression was thought to affect people in their early twenties or older. It was not viewed as an illness that could occur among children.
This has proven to be myth. The temperamental features and behaviors of bipolar disorder can begin to emerge very early on--even in infancy. But because a vast majority of bipolar children also meet criteria for ADHD (and the focus of drug treatment strategies becomes the symptoms of ADHD), the bipolar illness is typically overlooked. As a result, drugs are prescribed to deal only with the symptoms of hyperactivity and distractibility. And, since many, many children initially develop depressive symptoms as the earliest manifestation of the illness, bipolar disorder may again be discounted as the primary diagnosis.
Childhood bipolar disorder can overlap or occur with many disorders of childhood other than ADHD or depression: panic disorder, generalized anxiety disorder, obsessive-compulsive disorder (OCD), and Tourette's syndrome, to name a few. And this mixed-symptom picture can be perplexing and confound diagnosis. Moreover, only in the past few years has bipolar disorder become the focus of research inquiry.
The Illness in Adults
Bipolar disorder in children presents very differently from how it presents in adults. Adults typically experience a more classical pattern of mood swings. In the manic phase, the person experiences an increased rate of thinking, has surges of energy, and describes him- or herself as feeling more active, creative, intelligent, and sexual than he or she ever thought possible. The need for sleep diminishes as one idea after another bursts into consciousness and the person develops the expectation that he or she will be able to execute all the ideas that are flowing effortlessly into the mind. For many, a mild hypomania (less than manic state) is a period that brims with physical and mental well-being. It is often a time of great creativity.
Unfortunately, this enviable state does not last. A person experiencing the "highs" of manic-depression may make reckless decisions, go on buying sprees, commit sexual indiscretions, or bring financial ruin upon self and family. The mood of someone in a manic state is brittle and irritable; it may shift back and forth quickly, and the person may become very paranoid. If the hypomania escalates into a full-blown mania, the person can lose all touch with reality and become psychotic. In this stage (called stage-three mania), a doctor may be unable to tell whether the patient is schizophrenic or manic-depressive without having the family history and other information about the patient's previous functioning.
Typically, after the manic energy is spent, the person plummets into the depths of depression. The mind slows down to such a degree that any decision seems almost impossible to make. Some depressed people will experience insomnia and early-morning awakening; others will begin to sleep excessively and yet never feel rested. In addition to mood, energy, and sleep disturbances, a person in a depression may feel bodily pains such as headaches, backaches, and stomach problems.
Some adult patients will feel inordinate amounts of guilt; some will feel irritable, anxious, and hopeless. Depressed patients may feel they deserve only punishment and can become fixed on all the small mistakes they have made in their lives--losing any sense of past accomplishments. In the depths of depression, a person's thinking can become delusional and psychotic.
It is not unusual for adults to experience several weeks of hypomania or mania-very often in the spring or summer months-only to find their energy level ebbing as the days shorten in autumn. Individuals who experience depressions alternating with intense or psychotic manias are referred to as having the Bipolar I form of the disorder. Those who suffer depressions and experience only hypomanic episodes (they never get psychotic or lose total control) are referred to as being Bipolar II. Most adults will have well intervals in between the periods of heightened or lowered mood.
Bipolar Disorder in Children
Children rarely fit this recognizable pattern. They have a more chronic course of illness where they cycle back and forth with few discernible well periods in between. Some tend to cycle rapidly (more than four times a year); some cycle within the week or month (and may be called ultra-rapid cyclers). Many cycle so rapidly that they fit a pattern called ultra-ultra-rapid (ultradian) cycling: They may have frequent spikes of highs and lows within a twenty-four-hour period.
Almost all bipolar children have certain temperamental and behavioral traits in common. They tend to be inflexible and oppositional, they tend to be extraordinarily irritable, and almost all experience periods of explosive rage. They tantrum for hours at a time. Holes get kicked in walls, and parents and siblings and pets can be threatened or hurt.
Bipolar children don't often show this rageful side to the outside world. And because parents don't wish the outside world to see the child in this light, or to learn of their lack of control over the child--most people couldn't possibly imagine what actually goes on anyway--the illness stays behind closed doors as the parents try desperately to find some solutions to the fact that their lives are being turned upside down. As one woman described it: "We feel like we've been thrown into a tornado that is big, black, and powerful."
No one symptom identifies a child as having bipolar disorder, but if hyperactivity, irritable and shifting moods, and prolonged temper tantrums co-occur--and there is a history of mood disorders and/or alcoholism coming down either or both the mother's and father's line--the index of suspicion should be high.
Indeed, our study sample showed that over 80 percent of the children who developed early-onset bipolar disorder had what is known as "bilineal transmission"-substance abuse and mood disorders appeared on both sides of their families.
Perhaps the best way to get a "feel" for what the illness looks like in childhood is to listen to the voices of parents describing the temperaments and behaviors of their children.
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