Bipolar Disorder is probably the most controversial topic in the field of child and adolescent mental health. A 2007 study published in the Archives of General Psychiatry reported a 40-fold increase in office visits for pediatric bipolar disorder between 1994-95 and 2002-03. Fueling the controversy is concern that the vast majority of kids receiving a bipolar diagnosis don’t meet the official criteria for the condition outlined in the DSM-IV. In particular, many kids with predominantly irritable mood, symptoms of ADHD and difficulty with emotional self-regulation that often leads to aggressive behavior are receiving the diagnosis along with medication with potentially serious side effects.
In conjunction with a lecture I was invited to present at Pediatric Grand Rounds at Children’s Hospital Medical Center of Akron, I put together a six-part series to help children’s pastors, youth pastors and ministry volunteers better understand and serve kids with bipolar disorder and their families. This series was originally posted on the blog from August 15-20, 2010.
Child and adolescent psychiatrists and other mental health professionals continue to be engaged in a vigorous debate about the appropriate diagnostic criteria for bipolar disorder in children and teens.
Diagnostic criteria for all mental disorders are currently under review in anticipation of the release of the DSM-V (Diagnostic and Statistical Manual of Mental Disorders) in May, 2013. The controversy in the field about pediatric bipolar disorder is focused on whether the current diagnostic criteria apply to children and teens, especially the criteria for duration of mood episodes. Most kids who receive a bipolar diagnosis don’t meet the criteria, primarily because their mood episodes are too short. The vast majority of these kids have been diagnosed with ADHD, experience irritability as their predominant mood state and exhibit frequent and severe episodes of aggressive behavior. Dr. Ellen Leibenluft at the National Institute of Mental Health characterized such children as having “Severe Mood Dysregulation” or SMD. The DSM-V has proposed using the diagnosis Disruptive Mood Dysregulation Disorder to refer to the kids described in Dr. Leibenluft’s research. I’ll discuss these kids separately in a future post.
The American Academy of Child and Adolescent Psychiatry (of which I’m a member) has come down on the side of limiting use of term Bipolar Disorder to kids who have had at least one episode of mania or hypomania lasting at least four days and otherwise meet the existing criteria. For the purpose of this discussion, we’ll use the existing criteria:
A distinct period of elevated, expansive or irritable mood lasting at least one week in which three or more of the following are present (four if mood is only irritable):
Decreased need for sleep
Flight of ideas or racing thoughts
Increased goal-directed activity (psychomotor agitation)
Involvement with pleasurable behaviors with the potential for painful consequences
By definition, a person isn’t diagnosed with classic (Type I) bipolar disorder unless they have experienced at least one episode that meets the above criteria. Persons withhypomania experience mood disturbances lasting at least four days meeting the above criteria that aren’t severe enough to cause marked impairment in academic or social functioning, require hospitalization or are associated with psychotic symptoms. Persons with bipolar disorder may also experience episodes of depression (that’s where the term “manic depression” comes from), or episodes in which symptoms of mania are seen concomitantly with symptoms of depression (mixed episodes).
Coming back to our criteria, let’s look at how these symptoms manifest in kids and teens, keeping in mind that these symptoms represent a change from the child’s baseline:
Inflated self esteem, grandiosity: Most kids coming to a practice like mine have poor self-esteem. Kids or teens with bipolar disorder may present with severe bravado (the 80 lb. kid in fourth grade picking a fight with the 120 lb. kid in the seventh grade), an overinflated sense of their own attractiveness, or unrealistic belief in their own abilities (the high school junior who believes he’ll go on tour with a rock band as lead drummer despite never having taken drum lessons or performed publicly). It’s normal for an eight year old boy to believe he’ll play in the NFL. If you’re a third-string lineman as a high school senior on a 3-7 football team, that belief could be a problem.
Decreased need for sleep: Lots of conditions seen in kids and teens (anxiety, depression, ADHD, PTSD) are associated with difficulty falling asleep. Kids in manic episodes have difficulty staying asleep. In the midst of their mood episodes, they may not complain of feeling tired despite little sleep.
Pressured speech: During mood episodes, kids with bipolar disorder talk more, talk louder and talk faster. When I have difficulty understanding a kid’s speech when I could understand it before, I always ask other questions about bipolar disorder. Think about the guy at the end of the car commercials reading the disclaimer.
Flight of ideas, racing thoughts: As opposed to simply being distracted, kids with bipolar disorder may be unable to sustain a train of thought, or skip inappropriately from thought to thought.
Increased distractibility: Kids with concomitant ADHD will have more difficulty than normal paying attention during mood episodes.
Increased goal-directed activity, psychomotor agitation: Bipolar disorder is overrepresented among artists and writers. During episodes, they’ll start lots of projects they don’t finish. Kids with bipolar disorder who also have ADHD will be more fidgety, restless and hyperactive than would be typical for them on a day to day basis.
Involvement with pleasurable behaviors with the potential for painful consequences: Here’s where the big problems come in. Kids with bipolar disorder are prone to exhibit inappropriate sexual behavior in the midst of episodes. I can remember one school-age kid I took care of a number of years ago who needed a therapist to go out to his home during his episodes because he would try to mount his little sister and his parents needed guidance to keep his siblings safe. I had another patient…great kid, great family, active in youth group who was pulled over for driving 85-90 miles/hour in a 35 zone on a country road during a manic episode. Kids who wouldn’t otherwise steal will do so during episodes. Or drink. Or do drugs.
It’s important to note that there are lots of other conditions in which kids might experience some of the symptoms described above. Kids with Borderline Personality traits will experience frequent, dramatic mood swings, self-injurious behavior and often talk about or threaten suicide. Kids with ADHD are often impulsive. Kids who have been sexually traumatized not infrequently demonstrate inappropriate sexual behavior toward others. Illicit drugs or prescription medication may potentiate some of the symptoms described above.
To complicate matters further, kids and teens with bipolar disorder are extremely vulnerable to other emotional and behavioral disorders. 90% of school-age kids and 60% of teens with bipolar disorder have ADHD. 30-40% are identified with specific learning disabilities. 40-50% of adolescents with untreated bipolar disorder develop substance use disorders.
Kids with bipolar disorder often come from homes in which a parent is struggling with bipolar disorder. A child with one parent with bipolar disorder is 4-6X more likely to develop the condition. When both parents have bipolar disorder, the odds of their child developing the condition is 50-75%. Trauma and stressful life events may result in the release of hormones that activate genes linked to bipolar disorder. A recent study reported that kids with bipolar disorder were three times more likely to have been a victim of physical or sexual abuse compared to siblings without the disorder.
The takeaway from this discussion for folks in children’s and youth ministry is that we’re called to serve a population in which 1 out of every 100 kids will develop a condition by adolescence characterized by an episodic, severe inability to self-regulate their emotions and behavior.
Jesus was into lost sheep. See Matt 18:12-14. If he saw value in pursuing the one lost sheep out of a hundred maybe we should too?
What challenges do kids with bipolar disorder face?
Put yourself in the position of a kid with bipolar disorder.
Much of the time, your mood is likely to be sad, unhappy and for the most part, irritable. Odds are that you have more difficulty on a day to day basis maintaining your focus and concentration in school thanks to your ADHD. You have to work a lot harder than your friends to get the same results in school. It takes lots of mental effort to hold your behavior in check all day, and you still get into more trouble than anyone else. Because of your mood, you’re not the first person people seek out in the cafeteria at lunchtime.
And then you get to go home.
My former ministry teammate and colleague, Katie Wetherbee, works off three basic assumptions about kids when she’s training ministry staff or classroom teachers:
Kids want to be competent, effective learners
They feel upset when their behavior gets in the way
They fare better when they learn problem-solving strategies
With rare exceptions, kids want to be good. They want their parents to approve of them. They want other kids to like them and want to be with them. They want to be normal.
Bipolar disorder has nothing to do with intelligence. But kids with bipolar disorder often have more difficulties sustaining their concentration in school. Problems with sleep lead to forgetfulness. They may miss more school than other kids because of disciplinary actions or with exacerbations of their illness. 30-40% will have specific learning disabilities. School often presents another challenge to overcome as opposed to representing a strength they can build from.
Kids with bipolar disorder often become more easily irritated by relatively innocuous requests, comments or noxious stimuli in the environment. They may act in ways that come across to peers as being rude or thoughtless. They get tired of being judged by teachers and peers. The end result as they get older is often a retreat into alcohol or drugs as an escape from their emotional pain.
“I’m very sensitive and emotional and things upset me and makeme feel like not functioning or dealing with people… I went to a clinic, thinking it would help my moods. The only thing I did was to take one 500 question test – ya know, filling in the little black dots. All of a sudden I’m diagnosed manic-depressive. ‘Let’s put Axl on medication.’ Well, the medication doesn’t help me deal with the stress. The only thing it does is help keep people off my backbecause they figure I’m on medication.”
At home, kids with bipolar disorder often confront parents who express frustration with their conduct and disappointment with their academic performance. The parents themselves may be struggling with their own mental health issues, along with the isolation that frequently goes hand in hand with having a child with a serious mental illness. A church served by Key Ministry recently welcomed a mom to a respite event, representing her first opportunity in three years to go out without her son.
Finally, kids with bipolar disorder struggle to accept the need for ongoing treatment and tolerate the effects of available treatments. As I mentioned earlier, kids want to be normal. In a kid’s mind, the daily ritual of taking medication (the primary treatment for Type I bipolar disorder) serves as a constant reminder that they’re different or broken. The side effect profile of the FDA-approved medications for bipolar disorder often wreaks havoc upon their bodies. One study examining side effects of the most commonly prescribed medications for bipolar disorder in kids taking medication for the first time showed average weight gain ranging from 10-19 lb. in the first eleven weeks of treatment. I’ve seen kids who have gained over 100# after being started on medication for bipolar disorder. Think about the impact of weight gain on the self-confidence and body image of a teenager with a condition that already interferes with their social life. Some medications increase levels of prolactin, the hormone women produce when pregnant so they can breast feed. Boys often get breast enlargement, girls stop having periods. The biggest complaint I get from kids about medication is that they lose the “highs” that occurred during their cycles and only experience periods of depression or an overall sense of being blunted, not themselves, or in an emotional straitjacket. As a result, 2/3 of kids diagnosed with bipolar disorder stop taking medication regularly. Kids don’t necessarily appreciate the time or effort involved in more psychotherapeutically-based treatment.
I had a kid…we’ll call him Irv. He’s now an adult and is treated by a psychiatrist with expertise in bipolar disorder. He’s highly intelligent, very creative, very gifted, and experiences feelings far more intensely than most kids do. HATED feeling depressed, which would result from his tendency to obsess about his future (he also has OCD and ADHD). He repeatedly stopped taking his medication, despite the violent outbursts, suicide threats, risk-taking behaviors, family conflict and police involvement that usually resulted. In his mind, the brief times, maybe a half a day, maybe a day in which he’d feel alive and creative off medication were worth all the other stuff he had to experience.
Bottom line: Along with very thoughtful mental health care, kids with bipolar disorder need a place where they can experience unconditional love and a little grace. Any ideas about where they might go to find that?
What Challenges do Families of Kids with Bipolar Disorder Face?
Families of children with bipolar disorder encounter burdens and challenges unlike those associated with any other disability.
Bipolar Disorder can be considered as one of a number of “hidden disabilities,” serious emotional, behavioral, developmental or neurologic conditions in which there are no outwardly apparent physical symptoms. One common thread that runs through many hidden disabilities (ADHD, autism, attachment disorders, traumatic brain injury, fetal alcohol effects) is difficulty with emotional self-regulation. During a severe mood episode, kids or teens with bipolar disorder have problems with emotional self-regulation on steroids.
The following is from the website of the Child and Adolescent Bipolar Foundation:
Parents with concerns about their child’s extreme behaviors should consider the following steps:
- If your child is psychotic, suicidal, or menacing others: take him or her to the emergency room or call 911 for an ambulance (stress that the child needs medical care and an ambulance should be sent). If you are alone, also call a friend or relative to help you immediately.
- Ensure the safety of your family. Find safe havens for siblings. Remove all firearms from the home (this is a matter of life and death, not a political statement). Lock up sharps (knives, razors, whatever). Lock up all prescription and over-the-counter medications.
Think for a moment about living in a home like that. Or being a younger, more vulnerable child in a family living like that. On top of everything else, parents and siblings may have no idea on a day to day basis of what to expect from their brother or sister with bipolar disorder.
Parents of kids with bipolar disorder become tired of having to manage their child’s behavior—and explaining their behavior to others in new settings. If you’re shopping in Walmart and you see a child with Down’s Syndrome, a child with cerebral palsy or a child in a wheelchair having a meltdown, you’re not likely to give it a second thought. If the child looks and appears perfectly normal and the parent is flustered and overwhelmed, you might arrive at a different conclusion. While we’re on the subject, how do you think the people who attend your church would respond to a family in such a situation?
Social isolation is often the norm for families of kids with bipolar disorder. Assuming the parents are still married (a big assumption), they can’t just call up any teenage babysitter if they want to get out on Saturday night. Given our Walmart discussion, affected families don’t get out in public as much as their friends and neighbors. Siblings miss out on going to the movies, baseball games, concerts, and church. (More on missing church in Part Five.) Fatigue and economic strain are common. Frequent visits to physician’s offices and pharmacies can result in enormous financial burdens. Aripiprazole (Abilify®), one of the most commonly prescribed medications for kids with bipolar disorder, has an average wholesale price ranging from $330-$450/month. Most kids with bipolar disorder also have ADHD, with medications for that condition priced at around $150/month. There may not be money for any extras even if the family has the time or the energy.
Families also have to cope with the emotional toll of the relapses and recurrences that occur after the child has had a positive response to medication. In research conducted at the University of Cincinnati, Dr. Melissa DelBello was able to achieve remission of symptoms in 85% of kids treated for bipolar disorder, but 52% of those who responded to treatment experienced a relapse within the next year, with an average time to relapse of 17 weeks.
Here’s a video that was produced in an effort to obtain funding for a PBS documentary on the impact of bipolar disorder on families:
Just the kind of messy, broken families who are in need of extraordinary love.
How might bipolar disorder affect church participation and spiritual development?
When I sat down to write this post, I went through my caseload and came to the realization that out of my families with a child actively being treated for bipolar disorder, ONE is regularly participating in the worship and ministry of a local church. It’s more likely in our practice that a family of a child with an autism spectrum disorder will be involved with church than a family of a child with bipolar disorder.
The first challenge in considering the spiritual development of kids with bipolar disorder and their families is overcoming the isolation they experience from Christians and the local church. In many cases, kids with bipolar disorder are the ones parents get concerned about when they start spending time with their child. They don’t have friends inviting them to Vacation Bible School. By Sunday morning, the parents are often so fatigued from the stress and demands of the week, the notion of getting up early to get the kids ready for church, putting up with the inevitable fight when Mom insists that Junior turn off the Nintendo to get ready and listening to the anger and hostility that occurs during the car ride is too overwhelming. Assuming they knew of a church where their family would be welcome. Assuming the parent isn’t carrying memories of negative church experiences from growing up with bipolar disorder, or having a parent or sibling with bipolar disorder. Assuming that the parents have some spiritual awareness or sense that a church might have something to offer.
The desire for spiritual support grows dramatically for parents with special needs’ kids and the availability of such assistance is dramatically reduced. But!!!! The church must often go TO the parents not expect the parents to come TO the church.
Because of the cyclical nature of their difficulties with mood, attention and capacity for self-control, kids with bipolar disorder are going to have a much more difficult time maintaining a consistent practice of spiritual disciplines, compared even to a peer with ADHD. During more acute cycles, they may have a much harder time remembering Bible verses they’ve memorized, sustaining the concentration to pray, or maintaining the self-awareness to know when they need God’s help or support from Christian friends. Their inability to maintain a train of thought may make meditation or reflection on Scripture impossible. They may be more prone to distort or misinterpret teaching during mood episodes. They may have a harder time than their peers finding a church or a youth group willing to accept them. If the child or teenager is involved in a small group their participation in the group is likely to be more inconsistent. Because of the actions they engage in or the anxiety they experience associated with their mood disorder, they may be more prone to question the authenticity of their salvation or have others in the church question the depth of their faith.
Preparing for special events (mission trips, ministry retreats) that may be catalysts to spiritual growth is difficult when the teen or their family has no way of knowing whether their mood will be stable enough to participate. Many kids with bipolar disorder will have complicated medication regimens (the average number of psychotropic medications taken by a child or teen with bipolar disorder is 3.4, and some medication must be taken more than once a day) that may preclude overnight retreats or trips. Because of confidentiality concerns, parents may not want church volunteers to know about the full extent of their child’s daily medication.
Kids with bipolar disorder may miss out on opportunities to serve others through church. Leaders may express concern that they can’t be depended upon to follow through on commitments.
The bottom line is that a group of kids who have a critically acute need for parents equipped to be their primary faith trainers are among the least likely to have a connection with a church prepared to equip and resource their parent(s) for the task.
How can the church help?
A couple of weeks ago, I was sitting in a Board meeting at church in which we were discussing the concept of shifting from a “come and see” style of doing ministry, in which the church developed lots of cool events, worship experiences and attractions designed to bring people into our building to more of a “go and tell” style in which the people of the church become more outwardly focused, looking for opportunities to share the message of the Gospel in the surrounding community through serving others. The “come and see” strategy doesn’t appear to have been effective in attracting families of kids with bipolar disorder, but some combination of “come and see” and “go and tell” may be our best hope of connecting with them.
The church can respond to an immediate need by offering parents of kids with bipolar disorder opportunities for respite care. Key Ministry is working with Vineyard Community Church in Cincinnati as they lead the FREErespite movement, seeking to “aggressively pursue families of children with special needs through outreach with the great hope that they would connect to a church community and come to know Jesus as a result.”
One challenge in welcoming families to weekend worship experiences involves the lack of predictability on any given day of how kids with bipolar disorder will react to church environments. Unlike kids with autism or ADHD who tend to exhibit more consistency of behavior, kids with bipolar disorder may require different levels of support from week to week. Many kids with bipolar disorder are able to fully participate in all activities without accommodations or assistance during periods of mood stability and would be insulted by the presence of a “buddy.” Some churches have found that maintaining a pool of several volunteers working in tandem with the children’s or youth ministry leadership, available during worship hours to provide extra assistance when needed is a much less restrictive alternative to “buddies.” Special attention also needs to be paid to transition times at church…drop-off, unstructured time before and after ministry activities and times when kids are moving from large group worship to small group activities. Kids with bipolar disorder are most likely to experience irritability or difficulty with aggressive behavior during transition times.
Not every kid has to come to church to be ministered to by the church. Parents have far more time and opportunity to influence their children than the church does. Parents of a child with bipolar disorder are more likely to know the best strategies for communicating with them in different mood states. Equipping parents for spiritual leadership roles is an effective strategy for ministry to kids with disabilities. When a child’s aggressive behavior at church presents a significant risk to staff, volunteers and attendees, respite care can be offered in the home so that parents and siblings can attend worship, participate in small groups or Christian education activities and serve in ministries of the church.
Middle and high school ministry leaders can identify spiritually mature kids with the respect of their peers to look out for kids with bipolar disorder (and other conditions such as Social Anxiety Disorder or Asperger’s Disorder) who are prone to struggle with relationships and consistent participation in church activities.
Kids with bipolar disorder have gifts and talents, along with the same need for validation and recognition as their peers. Many are drawn to artistic pursuits…music, drama, art, literature. More than 20 different studies have suggested an increased rate of bipolar and depressive illnesses in highly creative people. Imagine the church being a place where they could make a meaningful contribution to the worship, creative arts, media and communication teams. A place where youth with “disabilities” can use their often considerable abilities to serve others while growing closer to God.
Close to twenty years ago, I was working with a single mother and her son (we’ll call him Dave) with bipolar disorder. Dave’s father had been hospitalized during bipolar episodes in which he became violent toward his mother. His parents divorced after his father refused to take medicine that kept his violent behavior in check.
Dave and his mother were connected to a very caring church, but a church that didn’t hold psychiatry or psychiatrists in high regard. Dave began exhibiting some of the same behavior that his father displayed during arguments with his mother, and I recommended medication. Dave’s mother insisted I speak to her their pastor before she’d agree to give him medication.
The first words out of the pastor’s mouth were to ask me if I had a saving relationship with Jesus Christ. After the pastor found out I used a study Bible published by his favorite seminary professor, we hit it off just fine. He specifically asked what the church could do to help. After describing the situation, the pastor recruited two men from the church for Dave’s mother to call when she saw signs he was becoming more irritated to come to the house and lend her support. The men also agreed to spend some fun time 1:1 with Mike and build a relationship with him so they would be in a position to be positive influences in his life. The intervention…medication plus male role models…was exactly what the situation called for.
Bottom line: The church did a great job of being the church for a boy with bipolar disorder and a mother in crisis not by establishing a program, but through responding to a need.
Resources for ministers and parents
To review what we’ve covered this past week, we’ve discussed the signs and symptoms of bipolar disorder in children and teens and explained some of the confusion about the diagnostic criteria, explored how the lives of kids and families are impacted by the condition, considered the obstacles pediatric bipolar disorder presents to church attendance and spiritual development and suggested strategies for churches seeking to minister to kids, teens and families touched by the illness.
Pastors and church staff are often the first point of contact for families of children in crisis. Not infrequently, those engaged in full-time ministry struggle with biological and adopted children suffering the effects of bipolar disorder and other hidden disabilities. Access to clear, non-biased information based on the best possible research is critical for parents who need to decide on their child’s treatment, as well as ministry professionals seeking to lend support.
Here are four resources I’d recommend highly to anyone looking to learn more about bipolar disorder in children and teens:
1. American Academy of Child and Adolescent Psychiatry (AACAP): AACAP has developed resource centers including links, articles, rating scales, video, and answers to frequently asked questions from parents on common emotional and behavioral disorders. The resource center for Bipolar Disorder may be accessed here.
2. Parents’ Medication Guide for Bipolar Disorder in Children & Adolescents: These guides were jointly developed by AACAP and the American Psychiatric Association. They are designed to help patients, families, and physicians make informed decisions about obtaining and administering the most appropriate care for a child with ADHD or depression. The guide for bipolar disorder was published this week and is available here.
3. The Balanced Mind Foundation: The Balanced Mind Foundation provides resources for families of kids with mood disorders. Many of the top researchers in the field serve as medical advisors to CABF, and the site features resources for parents, clinicians and educators.
4. National Institute of Mental Health (NIMH): NIMH is the Federal agency charged with transforming the understanding and treatment of mental illness through research. NIMH provides many excellent resources to the public on topics of interest in children’s mental health, and has published a free booklet, Bipolar Disorder in Children and Teens: A Parent’s Guide.