Lost in the Maze
Life with your child is chaotic. You never know what mood she’ll be in from one minute to the next. A simple request might trigger a violent outburst, like the time she heaved a rock through the living room window when you asked her to set the table for supper. Something that was fine yesterday causes a major meltdown today. Last week, she tried to jump out of the car—while it was moving—when she found out that you needed to swing by the post office before picking up her friend.
Your other kids complain: It’s not fair! You buy their sibling anything he wants. You never punish him for hitting or swearing or trashing a room. What’s worse is that you know they’re right. You do treat that child differently. You feel like you’re always walking on eggshells just to keep the peace.
You’ve been looking for answers, but all you’ve found is confusion.
Your mother-in-law chastises you for not being strict enough. Your child’s teacher suggests ADHD. The pediatrician shrugs and reminds you that each child is different. You wonder when parenting got this hard. Maybe you remember a time when it wasn’t this bad. Maybe not. Most days, you feel like you’re trapped in a maze. There’s no map, there are no bread crumbs to follow, and your ball of twine ran out long ago.
Parenting a child like yours is one of the toughest challenges a parent can face. Whether your son or daughter has been diagnosed with bipolar disorder or a different mood or behavior problem or behaves in ways that seem far from ordinary, this book is for you.
We can’t pluck you out of the maze, but we can help you find your way through it.
Bipolar disorder is a complex illness. It doesn’t look the same in everyone who has it. It often looks much different in kids than in adults. Bipolar isn’t like chicken pox, where everybody’s rash looks pretty much the same.
More often than not, it’s “bipolar plus”—plus ADHD, depression, severe anxiety, conduct disorder, and other brain glitches.* Your child might have one, several, or many of these, which makes diagnosis and treatment challenging. Imagine waking up one morning with chicken pox, poison ivy, hay fever, and pneumonia. Where do you begin? How do you tell one from the other? Which do you treat first? Should you treat all of them? How will treating one affect the others?
Bipolar disorder has been around for as long as there have been people, but it’s only been since the tail end of the twentieth century that we’ve started to understand what it is, how it develops, and what to do to help. Now, for the first time
*The formal medical term for “plus disorders” is comorbid disorders (for example, ADHD is a common comorbid disorder; many children who have bipolar disorder also have ADHD).
in history, solid research is joining practical experience—and the result is better diagnosis, more effective treatment, healthier kids, and happier families.
So come with us as we explore this maze. First, we’ll look at the main branches: what pediatric bipolar disorder is (and isn’t), why it’s hard to diagnose and treat, and an overview of treatment options. Other families will chime in with their stories and experiences, too.
Think of Chapter 1 as the map that helps you get your bearings—a place to catch your breath and discover that you’re not alone, and neither is your child.
What is bipolar? Who has it?
Until the early 1990s, scientists and the general public both thought bipolar disorder (also known as manic depression) was practically nonexistent in children and teens. But since 1995, research has repeatedly shown that bipolar disorder does occur in kids—and in great numbers.
According to researchers’ current estimates, about 1% of all children have bipolar disorder. That means in the United States alone, more than 750,000—three-quarters of a million—children under the age of eighteen meet all the criteria for bipolar disorder. The vast majority of them—at least 80% and probably more—are undiagnosed or misdiagnosed. Evidence from adult and clinical research suggests that another 3%–4% (up to three million) meet the criteria for bipolar spectrum disorders, with symptoms severe enough to cause signifi- cant problems. We also know that 5% of children suffer from depression and about half of them—nearly two million— develop bipolar disorder by the time they reach adulthood. That adds up to almost four million kids with bipolar symptoms, with as many as another two million whose major symptoms indicate depression but who may already be on the spectrum or at high risk for developing bipolar—a total of almost six million affected children in the United States.
Obviously, they’re everywhere. Why haven’t you seen them?
You have. These are the kids who get labeled as “bad kids,” their extreme “problem behaviors” blamed on bad parenting or violent video games. These are the kids who are diagnosed with ADHD, oppositional defiant disorder, or conduct disorder, and are treated—but the treatments either don’t work or make the problem worse. Then they get new labels: “borderline personality disorder” or “incorrigible.” These are the kids who get arrested for mania-induced behaviors they can’t control, and the kids whose illness gets worse because treatment is nonexistent or inappropriate.
Bipolar disorder is being diagnosed in children more often than ever before, and the rate of diagnosis is increas- ing. Is this the “new disease of the month,” a soon-to-be- forgotten fad? Is it just the latest excuse for children behaving badly?
One of the major reasons for the increase in diagnosis is that we now recognize that the symptoms of bipolar disorder in children are much different from those of adult bipolar disorder. In addition, researchers have discovered that bipolar often exists along with other conditions that can mimic, mask, and otherwise complicate the picture. Bipolar plus one or more of these conditions is much more common in pediatric bipolar than in the adult-onset disease. We now know that bipolar disorder is the primary diagnosis in many cases that have been labeled with other names.
The actual percentage of children with bipolar disorder may be increasing, too. Studies have not yet revealed clear reasons for this.
What is completely clear is that these kids have been here all along, and they’ve needed help.
What’s it like when your child or teen has bipolar disorder? Parents tell us—
• Every day is chaos. One minute, she’s fine, the next she thinks everything is hysterically funny and she’s talking a mile a minute, and a minute later she’s crabby and everybody runs for cover, because we don’t know if she’s going to blow up or calm down.
• “Meltdown” doesn’t even begin to describe it. We’re talking temper tantrums that last for hours—screaming, kicking, knocking holes in the walls, the works. The doctor says a lot of kids go through a phase like this, but we’ve been dealing with it for a really long time and it’s not getting any better.
• First, I have to deal with the stress of him exploding, then I have to listen to my husband about how I handled the situation all wrong. He thinks a lot of this is my fault.
• The teacher says he’s fine at school so it must be something I’m doing wrong—but I’ve taken every parenting class I can find. None of them work.
• She seems fixated on anything to do with sex. The school psychologist filed a complaint with DSS, and the social worker said the behavior had to be the result of sexual abuse, but we’re sure she hasn’t been abused.
• We never go out anymore—we’ve had enough night- mares to know it isn’t worth it. It’s one thing when your toddler throws a tantrum at the restaurant or stands on his chair and sings a song. When you’re talking about a fourteen-year-old . . .
• Our family doctor said it was ADHD, but the medication made things worse.
• It feels like her mood swings are holding us hostage. Our friends won’t visit anymore, and the neighbors don’t let their kids come over.
• I never know what’s going to set him off. We’re always walking on eggshells.
• If I knew about early-onset bipolar disorder twenty-one years ago, maybe my son would be alive today.
Bipolar disorder is a mood disorder—a mental illness that affects emotions. It’s chronic and lifelong and even in adults, it can be challenging to diagnose. Adults with bipolar typically cycle through periods of low mood (depression) and high mood (mania) and may have stretches of normal mood in between. In many adults, these mood states and cycles are clear and distinct, and each emotional state can last weeks or months before cycling into the next one.
Kids with bipolar experience intense mood states, too, but most don’t cycle in clear-cut patterns. Children and teens are much more likely to have mixed mood states (symptoms of both depression and mania present at the same time) and rapid cycling (switching between depression and mania very fast, many times a day, for example). This difference in how the moods change is one of the main reasons that bipolar isn’t recognized in children.
The symptoms caused by moods are often different in children, too. Most of us think mania means euphoria—over-the-top silly, “flying high,” lots of energy—and that depression means sad, lethargic, and joyless.
But in children, one of the most common symptoms of mania is extreme irritability, not euphoria. This manic irritability isn’t the occasional grumpiness of a bad hair day. It’s an irritability so extreme that it erupts in severe rages, which can include destructive, violent, or other dangerous behaviors.
Another kind of irritability shows up as a symptom of depression in children: They’re whiny and exceedingly diffi- cult to please. Parents describe their kids as snippy, snappy, grouchy, and downright nasty. Again, this is not the once-in-a-while fussiness of a tired child, the wheedling for a new toy, or disappointment that Mom said no. This is severe, intense, and disruptive.
Kids with bipolar can and do experience the other symptoms of mania and depression, but behaviors that stem from debilitating irritability are often the ones that first cause parents to seek help.
The diagnostic criteria—the symptoms you must have in order to be diagnosed—for bipolar and other mental disorders are listed in the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, fourth edition), the psychiatric bible relied upon throughout mental health fields to define specific illnesses and help clinicians make consistent diagnoses. Even though irritability is included as a possible symptom of bipolar, clinicians typically overlook it, especially in children; after all, irritability, like temper tantrums, is common in all kids. It can be hard for clinicians to understand that what parents are describing is not “ordinary” irritability or “typical” temper tantrums at all, but something that is severe, significant, and well beyond the ordinary. This misunderstanding about the difference between ordinary irritability and irritability from mania or depression is another reason that bipolar gets missed or misdiagnosed.
There are two other reasons that make identifying bipolar disorder in children difficult.
The first is a common misconception that bipolar symptoms only count if they happen in different settings. For bipolar, this is not true: Many kids are able to suppress their symptoms in certain situations. For example, they keep it together during school and fall apart as soon as they get home. They’re not falling apart at home because there’s something wrong at home; they’re falling apart because they’re exhausted from the effort to be “normal” at school, and home is a safe place where their friends won’t see them being “crazy.”
The other is the challenge of disorders that frequently occur alongside bipolar. In children, much more than in adults, it isn’t just bipolar disorder causing problems; it’s bipolar disorder plus one or more additional neurological glitches. For example, ADHD and bipolar can both include distracti- bility, impulsivity, and increased physical activity. Anxiety disorders and bipolar can both include an excessive focus on a particular task or idea. Learning disabilities and bipolar can both lead to after-school meltdowns and serious homework wars. Teachers and clinicians are more likely to notice symptoms that match illnesses and disabilities they’re most familiar with and diagnose those first, not realizing that symptoms that don’t quite fit are clues that the primary diagnosis is bipolar.
How Do We Help Our Kids?
If you’re the parent of one of these children, you know something is wrong, and you search hard for answers.
All too often, the answers you find are not helpful. Some- times those “answers” do more harm than good. Confronted with criticism about your parenting skills and judgmental reactions from teachers, caregivers, other family members, and friends, you may become increasingly isolated, convinced that there is nowhere to turn for the information and support you and your child desperately need.
Many clinicians hesitate to diagnose and treat children who have bipolar disorder. The DSM-IV doesn’t include a specific description for pediatric bipolar disorder distinct from adult-onset, and some clinicians simply refuse to believe that bipolar symptoms can appear in very young children, although there is clear evidence to support early onset, and the next edition of the DSM will likely include a section describing symptoms that are more common in children. Other clinicians believe in a “wait and see” approach, but without treatment, the illness becomes more severe. Untreated, there may be a greater chance that additional disorders will develop and treatment, when it finally begins, will be even more challenging. Some doctors do not have the knowledge to diagnose bipolar disorder in children. Their expertise lies in other areas, and they miss the hallmark symptoms.
As with any illness, timely diagnosis is crucial, but unlike strep throat or diabetes or cancer, the average time between the onset of bipolar symptoms and an accurate diagnosis is not days or weeks, but years—an average of ten years, years in which the disease worsens; the child misses critical developmental, social, and academic milestones; and the chances for a positive outcome—a healthy and productive life—continually decrease.
The good news: Parents who have been through this with their own children have formed support groups that reach out to others in neighborhoods and online. Organizations such as STEP Up for Kids, National Alliance on Mental Illness (NAMI), and the Child and Adolescent Bipolar Foundation (CABF) provide information, education, and connections to and for parents and other professionals.
More good news: Ongoing research is leading to timely, accurate diagnosis and more effective treatment.
Treatment is driven by the type and severity of symptoms and, for most families, involves a combination of approaches. Medications help stabilize moods and manage other symptoms. Different types of psychotherapy (sometimes for your child, sometimes for you or others in your family), special educational support, and complementary or alternative healthcare can all be part of your child’s treatment. Treatment—at least for now—won’t cure bipolar, but it will help you and your child manage it.
Bipolar can cause behaviors that are frightening, frustrating, and infuriating. Treatment is often complex and challenging. The demands of the illness put tremendous pressure on your entire family.
And you worry: Will my child have a normal life? What will happen when he grows up? Will she find happiness and fulfillment? Go to college? Get a job? Contribute to society?
Remember that your child is not his illness. He may have bipolar; he also has unique strengths.
We can’t know what gifts and talents are hidden. We can help our children discover and build on their strengths. We can nurture, guide, protect, and teach.
There are many ways to live a life, many ways to define success. Kids with bipolar have grown up to be successful in every type of job and industry, from science and engineering to performing and literary arts. The paths they traveled to get there were as varied and distinct as the individuals themselves.
Parents and other caregivers just like you helped them find their way.