By Mary Ann McDonnell, APRN, BC
CEO & Cofounder
STEP Up for Kids, Inc.
A note from CEHL founder, Howard S. King, MD, MPH
I have known much about the emotional problems of children for a long time, but I have become increasingly aware how little I know about bipolar disorders in childhood.
Over the years I have discovered it is often a poorly understood condition by physicians and others, and when it is undiagnosed it can have very serious consequences. And yet I have known adults who when they were appropriately treated did quite well over time.
I knew I had to learn more about this condition to become a better physician. I have recently had the good fortune to meet Mary Ann McDonnell, a psychiatric nurse who has taught me a great deal about the natural history of bipolar disorders in childhood. She helped teach me how pediatricians could become more knowledgeable not only about this condition but also about its impact upon families.
I asked her and she agreed to write one of the articles for this new section of the web site.
There are many things to be grateful about for her contribution. She is very open and sharing about herself and the complicated journey of becoming a good parent. She also knows a great deal about bipolar disorders and one of the things I like about her presentation is how she acknowledges the subtle interplay between genetics and the impact of the environment in how they determine outcomes. Her major focus, however, is regarding the importance of early diagnosis whenever possible and making timely referrals.
As she points out, that requires self-awareness on the part of the physician, spending adequate time in order to obtain an adequate family history, and the importance of developing a collaborative relationship with parents to achieve satisfactory outcomes.
I am grateful that Mary Ann has been willing to be a guide for me and others in examining some of the challenges associated with bipolar disorders in children.
On being a parent
Having delivered my first child when I was still a child myself at the age of 18, I was faced with many challenges. Motherhood is an art and loving a child comes natural to many of us. However, the knowledge and skills needed for effective parenting do not come naturally to most of us. Rather, they are learned through life experience and the examples set by our parents or caregivers. Those experiences at best can be loving, stable, consistent and secure, and at worst, chaotic, unpredictable, inconsistent and even violent. Our upbringing affects every essence of our being, from our values and personality to how we see the world and who we choose to include in our circle of friends and loved ones. It also affects our choices in a partner and how we parent our own children.
The impact of having children with a psychiatric disorder
Most parents if given the option would do whatever they could to protect their children from unnecessary suffering and the development of a serious psychiatric disorder. I understand this firsthand because all three of my children have been affected by psychiatric disorders. I would have done anything to prevent the suffering that they endured during their youth. As parents, we all have hopes and dreams for our children. Psychiatric disorders are never part of the plan when we bring a child into the world and it is a harsh reality when they occur. What's even harsher is finding out after the fact that there were things you could have done to prevent or minimize the severity of their illness if you intervened earlier in their life.
The best of intentions
As a naive, 18 year old mother, I was confident I could provide my first-born daughter with everything she would need: love, affection, guidance and protection. I took parenting classes, and was prepared with a list of questions whenever I took her to see the pediatrician. The pediatrician answered my questions and told me that my beautiful daughter was developing normally, and that she was walking and talking sooner than expected. She was perfect. I wanted to keep her that way and to protect her from all the pain and heartache that I had experienced in my adolescence.
The interplay between genetics and environment
However, genetics were not on her side, nor was her environment. The combined family history of her father and me included addiction, alcoholism, depression, ADHD, eating disorders, and anxiety disorders plus multiple medical disorders. Genetics and environment play a key role in the development of psychiatric disorders. From the moment of conception, my daughter and her two siblings were at risk for the development of several psychiatric and medical disorders which are hereditary. Could I have created a protective environment to shield my children from stressors that contributed to the development of their psychiatric disorders? According to research findings, the answer is yes.
There is always hope
I did not have the education that I have now when my children were young and I didn't recognize the symptoms that were present early on. As a result, my children did not get help until they were exhibiting problem behaviors and had full blown disorders. Like most parents, I found it easier to disregard their problem behaviors as normal variants of childhood than to consider that my child might have a problem which warranted professional help. The good news is that with intervention and a lot of love, all three of my children have grown into beautiful, healthy young adults. In fact, all three of my children have dedicated their lives to helping others, with two of them having obtained college degrees in psychology.
My commitment to helping others
Through my own life experience and that of my children, I have developed a strong passion for helping others and have focused my career on educating parents and professionals about psychiatric disorders. My hope is that increased awareness among parents and professionals will promote earlier recognition of symptoms, earlier intervention, and will --ultimately prevent unnecessary suffering in children and adolescents.
The importance of prevention
Many factors play a role in the development of serious mental illness. Most psychiatric disorders have an underlying biological origin and are hereditary. What this means is that if someone in your family has a disorder that is hereditary (as most psychiatric disorders are) then you and your children may have an increased risk for developing that illness. However, it does not mean that your child will definitely develop the disorder. There are many other factors that increase your risks. It is important to know what these factors are so that you can be proactive and help those children who are at risk. Remember, preventing a full blown psychiatric disorder is far more effective than treating it once it has developed.
Bipolar disorders and basic statistics
One of the most debilitating psychiatric disorders which can begin in childhood is bipolar disorder. Through my work with many families in research studies and in my practice, I have witnessed profound suffering and tragic outcomes in children and adolescents who have gone undiagnosed and untreated for many years. It is estimated that up to 5.7% of youth suffer from PBD, and that it is the sixth leading cause of death and disability in 15 to 44 year old individuals. By the age of 25, individuals who have been untreated can expect to lose 14 years of effective functioning in work and school and with family, and maybe even nine years of life.
The risks resulting from bipolar disorders in children
Pediatric bipolar disorder may carry an even greater risk of mortality from suicide. In fact 25-50% of individuals with bipolar disorder attempt suicide at least once, and between 8.6-18.9% die by suicide. Individuals with bipolar disorder are at the highest risk of suicide attempts with nearly one third of them having attempted suicide in their early years. They are also at an increased risk for substance abuse, alcohol abuse, obsessive compulsive disorder, school failure, and legal problems.
The theory is that early intervention may delay the onset of the first manic episode and may even prevent the development of full bipolar disorder. This makes early diagnosis a top priority. Findings from research studies suggest that if pediatric bipolar disorder is left undiagnosed and untreated, it can follow a progressive course, with recurrent episodes that become increasingly severe and resistant to treatment. Timely diagnosis and intervention is essential to preventing unnecessary suffering and the development of further psychiatric disorders in youth.
The role of 'kindling'
The theory of 'kindling' in mood suggests that the combination of stress in a person's environment and their genetic (or hereditary) vulnerability may lead to a full mood episode and once a full mood episode has occurred, future episodes are triggered more easily with a mild trigger or event. Over time, episodes begin to develop spontaneously with no trigger at all. Interventions during the early course of 'kindling' may prevent progression of the illness.
The importance of early diagnosis
Early identification of symptoms in youth offers the possibility of timely intervention, which could improve outcomes and decrease the burden over a person's lifetime. Undiagnosed, pediatric bipolar disorder is likely to become a chronic condition, with reoccurring episodes and a high risk of a poor outcome. Furthermore, if the child is misdiagnosed, they may be treated with medications that are harmful to them and may make their symptoms worse. These are just a few of the reasons why it is imperative to detect symptoms early and offer proper diagnosis and treatment of pediatric bipolar disorder and other psychiatric disorders which occur in childhood.
Parents: Don't wait until your child is out of control to seek help from a professional.
Professionals: Don't wait for a parent to report behavioral problems or concerns to you. Be proactive and ask questions during routine visits to assess for risks and/or early symptoms of an emerging disorder.
Many parents wait until their child is very ill or out of control and in serious trouble before they get help. They often miss or shrug off symptoms of an emerging disorder because they think the behaviors are a normal part of a developmental stage, which will pass or they lack awareness that the symptoms may indicate that there is something serious going on with their child. With little effort from health care professionals, prevention is possible. Remember, undoing years of damage and the progression of illness is a lot harder than implementing an intervention at an early age and preventing the damage from occurring in the first place. This is where pediatricians and nurses can be especially effective since they are often the only medical professional who is interacting with the child and family.
How can parents and health care professionals help with early identification of risk factors and symptoms of psychiatric disorders?
Parents: Ask your relatives or friends of the family about whether anyone in your family was ever diagnosed with, or suspected to have a psychiatric disorder. If you can, gather as much information about their symptoms, and disorder and talk to your pediatrician or nurse about them. They can educate you about which disorders are hereditary and what symptoms you should be on the lookout for, and help you to develop a plan of action should they arise.
Professionals: Ask your patients about their family history. Use simple words, such as were they moody, ever hospitalized for psychiatric symptoms, or have problems with drugs or alcohol, depression, anxiety, mood swings, hyperactivity or inattention? There are several questionnaires which the parent can fill out while in the waiting area, which will save you time in your assessment.
Depression in early childhood increases the risk for the development of bipolar disorder in youth. If a child presents with depressive symptoms, keep a lookout and educate parents to be on the look out for manic symptoms. Findings from research studies suggest that up to 50% of depressed children go on to develop bipolar disorder by early adulthood.
The range of co-existing psychiatric disorders with bipolar disorder and the quality of presenting symptoms may vary greatly according to the age of onset and how long the illness has been present. While rates of diagnosis between boys and girls are equivalent, symptoms can manifest themselves differently between boys and girls. Girls present with more depressed mood than boys and boys present with more mania than girls. However, they have similar increases in depressive symptoms in adolescence.
Early life stress can influence the development and course of psychiatric disorders. Children who experience stress during periods of development may have permanent changes which shape the brain regions that mediate stress and emotion. The affected regions may, in turn, lead to an alteration in emotional processing and a heightened response to stress. In an individual with a genetic predisposition to a psychiatric disorder, early stress could be a key determinant of the development of that disorder.
Other risk factors that have been linked to the development of psychopathology include living in poverty and exposure to violence at a young age. The more frequently a child is exposed to violence, the more likely he or she is to have a worse outcome. Stress-induced alteration in prepubertal adolescents may increase the risk of vulnerability to the onset of psychopathology during adolescence. It is essential to ask parents about the home environment and to refer them to programs and services for help if they are living in a stressful, chaotic or dangerous environment.
The Gene-Environment Interaction
Family and adoptive studies have shown that heredity is a significant predictor of the development of bipolar disorder. Children who have a biological parent with bipolar disorder average a five fold increase in the likelihood of having bipolar disorder themselves, and a 2.5 fold increase in the risk of having the disorder if they have a second degree relative, such as a grandparent with bipolar disorder.
Based on the adult data, bipolar disorder affects 1 in 4 adults with findings from genetic studies of adult-onset bipolar disorder showing clear familiarity, with some studies reporting a 10-fold increase in the risk of bipolar disorder in first degree relatives of bipolar probands compared to control families. Given the heritability of bipolar disorder, offspring of adults with bipolar disorder are at an increased risk. Other than family history, there is no other risk factor that has been documented sufficiently to justify its integration into clinical decision making regarding the diagnosis of pediatric bipolar disorder.
Culture and symptom expression
Culture is known to influence the expression of mental health symptoms by the individual and the assessment and interpretation of symptoms by clinicians. Children are more likely to convey psychological distress in a manner consistent with their family's customs. Findings from research studies have shown that misdiagnosis is common in different racial and ethnic groups. If you are not familiar with the customs of your patients, consult with someone who is so you don't miss important symptoms or misinterpret them.
Mary Ann McDonnell, APRN, BC
CEO & Cofounder
STEP Up for Kids, Inc.
435 Furnace St
Marshfield, MA 02050B
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I would like to thank the following for their generous support, without whom this web site and training program would not exist: The Sidney R. Baer, Jr. Foundation, The Alden Trust, the Commonwealth of Massachusetts Department of Mental Health, Project INTERFACE (Newton Public Schools and the U.S. Department of Education), the Locke Educational Fund at Newton- Wellesley Hospital, Aetna Health Plan, the Kenneth B. Schwartz Center, and the families of my medical practice.
I hope you find this site useful and encourage any comments.
- Dr. Howard King, M.D.