Let the conversation begin.
As Field of Psychiatry Grapples with Diagnosing Early-Onset Bipolar Disorder, Our Children and Their Parents Pay the Price
Post by Kerry Martin, CEO and Founder, Hope Xchange Nonprofit.
On Tuesday, June 27, Kristian Keefer-McNeil, mother of two children with special needs and mental health advocate, shared the details of her fight to obtain mental health care for her daughter on a guest blog on our site, Why Does My Suicidal 11-Year Old’s Mental Illness Matter Less Than Another Child's Physical Illness?
In our post, Julie A. Fast and I asked kindred spirits to open their hearts and wallets and join us in donating to Kristian's GoFundMe campaign to raise the needed $400 to cover out-of-pocket costs for a needed psychological evaluation denied by Medicaid. Thanks to generous donations, we were able to do so and Kristian has now shut down the campaign so we can help raise funds for another family in need. Kristian, Julie and I would like to extend our heartfelt thanks to those who donated.
Because of the outpouring of support, Kristian and I would like to bring you an update on her daughter. What is happening with her now, just a few days after our post, further frustrates and baffles us both in regards to the state of the mental health care system particularly in more rural areas, and how our children with mental illnesses and their parents are suffering as a result.
A Note from Kristian On Her Daughter’s CRNP Mental Health Appointment The Day After Our Post: "Diagnosis Du Jour"
My daughter sees a certified registered nurse practitioner (CRNP) who manages her mental health medicines since there has not been a psychiatrist anywhere in the area available to see her. Until now that is. Thanks to some amazing friends, I can keep and try to move up her appointment with a psychiatrist in another part of our state.
But, in the meantime, I must keep taking her to the CRNP for medication management. The nurse practitioner works for a small autism clinic about an hour away from us. (My daughter is diagnosed as being mildly on the autism spectrum in addition to her anxiety and mood disorder.) There is no psychiatrist working at this clinic but the nurse practitioner always tells me that she worked under the direction of a psychiatrist for many years before coming here.
Today, she informs me that my daughter has Disruptive Mood Dysregulation Disorder (DMDD). One week she told me that this is not the same as Bipolar Disorder. The next appointment, she told me that my daughter has Bipolar Disorder. Now this week she told me that no provider will EVER diagnose Bipolar Disorder in a child.
This has all left me very confused.
When you hear “Disruptive Mood Dysregulation Disorder,” what do you think of? When I hear the word disruptive, I think of the Disruptive Behavior Disorders. This just doesn’t seem to fit with what is going on with many of our kiddos. I have talked to other parents of children who have been given the same diagnosis even though we know it is bipolar.
That being said, the CRNP is not correct. Some clinicians do use the Bipolar Diagnosis. In fact, the DSM allows for this. It simply no longer has a differentiation between bipolar in children or adults. If a child meets some criteria for bipolar but NOT ALL, then they may end up being diagnosed with DMDD.
THE two diagnoses are not the SAME. Yet, she is saying that DMDD is the SAME as bipolar and that bipolar CANNOT be diagnosed in children.
This simply is not the case! DMDD is for kiddos who do not clearly meet enough criteria to be diagnosed with either bipolar I or bipolar II.
Her Daughter's Appointment Begs the Question Can Early-Onset Bipolar Disorder Be Diagnosed in Children?
According to the Juvenile Bipolar Research Foundation (JBRF), the field of psychiatry is in a period of flux and there is much controversy as to whether children can be diagnosed with bipolar disorder. The confusion is due to the facts that most children do not exhibit the manic behaviors described in the DSM and most do not shift their moods in the clearly defined patterns which meet the described duration thresholds. Because of this, most children are diagnosed with a classification which allows for a sub-threshold presentation of symptoms that is called Bipolar Disorder; Not Otherwise Specified (BP-NOS).
For those interested in the nitty-gritty, here are the specifics according to the JBRF:
Currently, the DSM lists bipolar disorder in the adult mood disorder section of the manual. This is because until relatively recently, it was not thought that children could experience manic symptoms. Indeed, some children do meet criteria for the adult classification of bipolar I or II as defined in the DSM, and now receive the diagnosis. These children experience clearly defined episodes of manic (or irritable) behavior marked with grandiosity which last for days and which cycle with longer periods of stability and depression.
However, the behavior exhibited by most children is not like that. Instead their moods changes with great frequency never allowing the manic (or depressed) mood to last long enough to meet the duration requirements of the DSM and they may not cycle between illness and stability. Further, many children do not exhibit the manic grandiosity which is required by DSM.
These differences have fueled a debate over whether a child with this profile can actually be considered to have bipolar disorder or if perhaps the profile represents a different condition altogether (see DMDD; A New Classification for DSM).
Regardless of which side of the debate an expert falls, it is almost universally recognized that these children are very ill and that further diagnostic clarification is needed.
To address the problem, a committee convened in 2000 and announced the creation of a sub-classification of bipolar disorder called Bipolar Disorder-Not Otherwise Specified (BP-NOS). Under this subcategory, children who were severely impaired by mood disorder but did not meet full criteria for bipolar disorder could still qualify for insurance and accommodation while research into their condition continued.
Today, most children receive the BP-NOS diagnosis.
The PROBLEM - Our Children and Their Parents Pay the Price
The fact of the matter is children with bipolar disorder are often severely ill, receive multiple other diagnoses and are often disadvantaged for a very long time before a proper diagnosis is made. And, this is exactly what we are seeing with Kristian's daughter.
Kristian and other parents with children who have similar struggles should not be in a state of utter confusion because "the field of psychiatry is in a period of flux!"
Furthermore, no child should go without needed treatment because the mental health care system is broken and not adequately funded. Society must recognize mental illness for what it is, a physical illness, that should receive equal attention and funding.
It is not those who suffer from bipolar who are in disorder, it is society.
Hope Xchange will continue to keep you updated on Kristian's journey as she fights for her daughter. And, we plan to continue to fight right alongside beside her.