Bipolar no more?

The new DSM 5, the bible for psychiatric disorders, intends to do away with a bipolar diagnosis for many children and teens.  A new diagnostic category, temper dysregulation disorder (TDD) is being proposed and would include symptoms of bipolar disorder.  The new diagnosis of TDD (does this really denote a serious medical condition?) will surprise and dismay many parents.  Families usually struggle for years with their child’s unpredictable behavior, intense moods and volcanic temper tantrums while strangers, friends and family assume that what is wrong is inadequate parenting.   A bipolar diagnosis has helped many parents get treatment, school services and a recognition that what they are dealing with at home is serious stuff indeed.

The DSM is many things to many people.  Mental health clinicians rely on it to help form an accurate diagnosis.  Insurers use it to authorize payment for medically necessary treatment.  Schools often cite diagnoses in the student’s education plan.  Even juvenile courts use it to better understand the behaviors that might bring a youth into court. 

The DSM 5 Child and Adolescent Disorders Workgroup has listed several reasons for the recommended change.  The rise in prescribing psychotropic medications for children is one.  The group also cites a study that “found a 40-fold increase between 1994 and 2003 in the number of outpatient pediatric psychiatry visits associated with the diagnosis of BD [bipolar disorder].”   Yet, a 2007 study found that youth released from the hospital with a primary diagnosis of bipolar amounted to less than one in a thousand.

But in 1994, practically no children were diagnosed with bipolar disorder, so any increase from “almost nothing” would be startling.  In the early 90s, I was running support groups where parents would share stories with each other about their child’s moods (from rage to extreme silliness to wanting to die), the nightmares that came almost every night, the rigid food preferences and risky behaviors.  Most parents worked, had little support and felt overwhelmed by the impact on their family.  Parents were told their children had ADHD, anti-social personalities, were oppositional or had conduct disorder.  Somehow these diagnoses didn’t capture the gravity or complexity of the situation.

The DSM is not a coding system set up for the convenience of the insurance industry or to create a shorthand for schools. Yet, a child must often be labeled “something” in order to get services.  We all give lip service to measuring the “functioning” of a child but that still doesn’t open doors or get services paid for.  The reality is that parents often have to fight for services.  We may decry the need for labels and powerful diagnoses, but at this point in time it’s what we have.  Those diagnoses have to increase access for children as well as describe their symptoms.

Most of the children and youth who now have a bipolar disorder diagnosis require medication, therapy, special education strategies and a loving, dedicated parent who is willing to do battle to obtain the needed treatments and services in order to improve things.  It’s a diagnosis that does not imply that “bad” parenting is the cause, which allows parents to be partners in creating and carrying out a treatment plan, just as they would if this were any other medical illness.   It also does not imply the child is to blame, which is often equally important.

Any new diagnosis proposed by the DSM 5 needs to send a clear signal to insurers, schools and the general public that bipolar in children is very real and very serious.  Parents already know this.  There is still time for comments at  www.dsm5.org until April 20, 2010. 

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Yes, there’s been a gap between the last post and this one.  I got a house ready to be sold, sold it and am getting ready to move.  It certainly devoured a lot of my time.  But I have been thinking about children’s mental health a great deal and the posts will keep on coming!

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3 Responses to Bipolar no more?

  1. Dave Stevens says:

    Here is a related post.

    Childhood Bipolar Disorder is not Bipolar?
    DSM-V and the new Temper Dysregulation Disorder
    with Dysphoria http://bit.ly/dbrRNm

    Child Psychology Research Blog – Nestor Lopez-Duran PhD

  2. Deborah Jean Parsons says:

    In 1994, I worked as a Service Coordinator for the wraparound program, Project Connect. As part of my job, I was sent to a workshop on the review of the new DSM-IV guidelines specifically because we were getting more and more referrals for children who had bipolar disorder. It seemed as though this increase in childhood bipolar disorder diagnosis was happening almost over night.

    At that workshop, I heard from a mother who spoke about how she struggled her whole childhood from this disorder without any benefit of treatment or understanding. When she noticed similar symptoms in her 9 year old daughter, she was quick to respond and was pleased with the resulting diagnosis and medication regime. She was a powerful speaker who underlined the importance of accurately diagnosing disorders and providing prompt access to treatment.

    While I agree with the professional reasoning and wisdom behind the recent change in the bipolar diagnosis in children…there has most definitely been an explosion in diagnosing children with bipolar disorder, particularly in the Boston area…I am ambivalent about the new category and I fear for the unintended consequences this might bring. Specifically, I share the concern that this new category will not be given similar credence or clout as a bipolar diagnosis, which means that families will not get the proper treatment or understanding for their suffering children. I am most afraid that service providers will use the new name, temper dysregulation disorder, as a way to deny services because it could be seen as a “behavior” issue and not a bone fide disorder.

    If we are to move forward with this newly named disorder, then we must move forward with a renewed commitment to provide treatment for those who suffer from it. If this new category were to be seen as somehow less debilitating than bipolar and therefore less deserving of services from insurance companies, schools and state agencies, this would be a disgrace and a disservice to everyone…families and children alike.

    Temper dysregularion disorder with dysthymia…call it what you like, but treat it for what it is…a real, debilitating and potentially devastating condition.

  3. Mark Zanger says:

    My son was diagnosed with bipolar in 1997, age 14. He met all the criteria, including clear mania. I will say that his symptoms have never resolved into the classic adult symptoms of clearly demarcated mood cycles, although he still has times of extreme up and down. Working in mobile crisis intervention, I don’t feel like we are seeing kids with bp diagnoses more than the proportion of lifetime incidence, maybe 2-3%, so this pendulum may already have swung, even in Boston. We do see and sometimes our clinicians make diagnoses of “mood disorder, not otherwise specified,” but usually only after pretty extreme behavior and rule-outs of other possibilities. We do see a lot of young kids with explosive or out of control behaviors, where it is unclear what is driving their car. They may or may not have a family history of mood disorder.

    I have recently become more interested in the Ross Greene/Stuart Ablon model of “The Explosive Child”/Think Kids. This also is a model which does not blame parents or kids, but views explosive interactions as a result of weak skills that can be defined and worked on like learning disabilities, although they do not conform mostly to the learning disabilities listed under IDEA. I believe Dr. Greene was once the speaker at a PAL statewide meeting, and well received.

    I do see us coming to the end of the honeymoon period with Medicaid hmos and behavioral health managed-care entities, in which authorization for CBHI services will be contested more and delayed in Massachusetts. Despite the improvements in wording of our state’s parity law, parents are going to know much better than doctors and social workers what is going on with our kids, and we will have to advocate for treatments that work against mechanical sorting systems, no matter what your favorite DSM number is.