New Diagnosis for Our Kids: The DSM-V and DMDD

The DSM is the classification of mental disorders in the United States. Clinicians, insurers, legislatures, the FDA and educators use it. The fifth edition is due to be released next spring, and it has many ramifications for our children with mood disorders.

One of the most significant proposals for Balanced Mind families is the proposed inclusion of a new diagnosis for children called Disruptive Mood Dysregulation Disorder (DMDD). I attended a full day symposium at the annual meeting of the American Academy of Child & Adolescent Psychiatry (AACAP) in late October in order to address our parent’s strong interest in this matter. Many of the members of the Child Work Group of the DSM-V were on the panel.

Disruptive Mood Dysregulation Disorder (DMDD) is characterized as follows:

A. Severe recurrent temper outbursts that are grossly out of proportion in intensity or duration to the situation.

B. The temper outbursts are manifest in the form of verbal rages or physical aggression towards people or property.

C. The temper outbursts are inconsistent with developmental level.

D. The temper outbursts occur, on average, three or more times per week.

E. Nearly every day, most of the day, the mood between temper outbursts is persistently irritable or angry.

F. The irritable or angry mood is observable by others (e.g., parents, teachers, peers).

G. The diagnosis should not be made for the first time before age 6 or after age 18.

H. The onset of these symptoms is before age 10 years.

I. There has never been a distinct period lasting more than one day during which abnormally elevated or expansive mood was present most of the day, and the abnormally elevated or expansive mood was accompanied by the onset or worsening, of three of the criteria of mania (such as grandiosity or inflated self-esteem, decreased need for sleep, pressured speech, flight of idea, distractibility, increase in goal directed activity, or excessive involvement in activities with a high potential for painful consequences). 
J. The behaviors do not occur exclusively during an episode of Major Depressive Disorder and are not better accounted for by another mental disorder. The symptoms are not due to the effects of a drug or to a general medical or neurological condition.

In summary, DMDD is severe, chronic irritability, lasting most of the day, every day, for at least a year. It can be contrasted to bipolar disorder, which is characterized by distinct episodes of mania and depression.

The field trials for DMDD, where the proposed diagnoses are tested for reliability and validity, resulted in a rating of “good*.” Why the asterisk? While two of the smaller study sites produced “unacceptable” results, those sites had a high proportion of outpatient children. The larger site where there was a high percentage of children who were inpatients resulted in a “very good” rating. Since this illness is characterized by its severity, it was theorized that a population of inpatient children, whose illnesses are more severe, would yield more diagnoses for DMDD.

The APA is now in the final stages of deciding whether to include DMDD in the main section of DSM-5, as opposed to Section III, which contains “provisional” diagnoses. Stay tuned… We hope to share that with you by the end of this year.

While speaking with many of the researchers and child psychiatrists at AACAP, I learned that their opinions are almost as varied as our parents. Many clinicians think that that DMDD will finally give many of their young patients a “diagnostic home.” They are referring to children who are severely ill, but do not meet criteria for bipolar disorder. Conversely, some researchers worry that the underlying research for DMDD only took place at one site, and should be replicated at several sites before it’s included in the DSM-V. While that research was done at the world-renowned NIMH, and is very highly regarded, the research was done on a slightly different syndrome called Severe Mood Dysregulation

I know this can be frustrating for parents. If the experts can’t agree, what does that mean for my child? Remember that researchers constantly refine and improve our understanding of these illnesses. That means they will often disagree with one another, challenge each other’s theories, and try to prove or disprove their own, or other’s hypotheses. In other words, it’s their job to debate one another, instead of resting on their laurels. Do not be discouraged!

Look where that debate has taken us since the founding of The Balanced Mind Parent Network in 1999 when only a handful of studies existed , and a scarce few children received treatment for their severe mood disorders. We now have hundreds of studies on children and a proposal to further refine and categorize a large group of children in two in order to better define their symptom clusters and better inform treatment. We know a lot more about the safety of treatments for children, several treatments have received a FDA indication for use in children, and we have a treatment protocol for children with bipolar disorder

Is the DSM-V perfect? No, but its an improvement. Science is by nature evolutionary, and we still have much to learn about the nature and treatment of our children’s mood disorders. As Helena Chmura Kraemer, Ph.D., a Professor of Psychiatry at University of Pittsburgh who heavily influenced the field trial design of the DSM-V, stated, “How does one distinguish between a disorder and a diagnosis? A disorder is the disruption of normal physical or mental functions; a disease or abnormal condition. A diagnosis is an opinion that a disorder exists.”

And so it goes with psychiatric illnesses. Until we have a biomarker, diagnosis is an opinion based on observation of a cluster of symptoms. This is one reason why psychiatric illnesses are so highly controversial; until we have a biomarker, like a blood test or a brain scan, doctors are making informed opinions based on observations.

The Balanced Mind’s mission is to inform and support you. Please post your comments here so that those who are making the final decision on the fate of DMDD can hear parents’ voices.

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i can only suggest that if our kid have that medical concern such as Disruptive Mood Dysregulation Disorder (DMDD) then let our kid rest or relax in a fauteuil relax

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Amen Cathy P. I couldn't have said it better myself. Through my own Internet research, I came across severe mood dysregulation, and since I read the first description two years ago, I knew in my gut that this disorder fit my 13-year-old daughter to a "T". Have never seen any mania. The chronic nature of the disorder makes the negativity, intolerance for anything annoying or frustrating, and irritability relentless and exhausts everyone who spends a significant amount of time with my daughter. The rages thrown in are even worse. My daughter threatens to kill me by stabbing and tries to beat me up. Plain and simple, she is a bully at home.

Meds have not helped, except she will sleep alone and shower without an argument since she started taking Lamictal. We were just at the NIMH this past Monday for an assessment, and my daughter was thankfully found to be eligible to participate in a longitudinal study (mostly on the brain), but not a treatment study since we live in Michigan, too far away from MD. Hopefully this new disorder will in fact drive many more treatment studies. Right now I am feeling hopeless and trying without much success not to allow my daughter's illness to run my life. Our having to accommodate her by having such low expectations is about all we can do to keep some semblance of peace at home.

I am elated to have this disorder recognized and included in the DSM. I feel tremendous relief to have a hook to hang my daughter's hat on when the BP disorder made no sense to me, even if it did to her psychiatrist. I am fully supportive as a parent who truly has a child with DMDD.

Mary
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Mary, 52, single working mom to Ben, age 18, who keeps me positive with his sense of humor, and to Ana, age 13, adopted from Guatemala as an infant, diagnosed with mood disorder, nos, and GAD, but showing sx since 3 years old. Clonidine-.1mg, Abilify-5mg., Lamictal -200 mg.

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Mary, I have a 17 - almost 18-year-old son diagnosed with bipolar only about a year ago. When I read about DMDD, I said "That is my son!" I am brand new to the life of BP disorder and trying to find the right treatment.

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Chris B

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The recognition and understanding of mental health conditions have changed over time and across cultures and there are still variations in definition, assessment and classification, although standard guideline criteria are widely used. In many cases, there appears to be a continuum between mental health and mental illness, making diagnosis complex. -954-691-1102

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This must be very difficult for all the authorities to handle such children. I wonder how the parents mange to control the situation if their child suffering from mental disorder.

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It is indescribably crucial, for so many children, that this proposal is accepted, because diagnoses drive treatment! And it drives research! DMDD describes EXACTLY my daughter’s reality throughout her childhood and teens and beyond. This proposed diagnostic category is describing the day-to-day struggles for a great number of children…why would we NOT want to put in place something that might be a better fit, a better launching pad for treatment and understanding, for these kids?? Just as with BP1 or BP2, It has been like watching a long, horrific train wreck from the inside out. For us, the closest fit was Early Onset Ultra Rapid-Cycling Bi Polar Disorder, but it took almost a decade to get that diagnoses. At that time, treatment protocols, and I guess the diagnostic manual did not allow for this diagnoses in young children. Also, there was no “Severe Mood Deregulation,” which would have fit pretty darn well! Both the head of pediatric Psychiatry at Oakland Children’s Hospital and the psychiatrist at Kaiser diagnosed her with Childhood Depression and put her on antidepressants. As many of you have also experienced his made things worse, much worse. FOR EIGHT YEARS! THE DEPRESSION THAT WE SAW WAS THE FALLOUT FROM THE RAGES. The rages tore her apart and made her HATE HERSELF. The diagnostic tools available to these good doctors were too limited. A more REFINED Diagnoses and treatment that could actually help was not IN THE BOOK. Furthermore, the one medication that finally HELPED was a drug that no Kaiser doctor would prescribe to a child because IT was not in the book, the protocol. Every doc we met was tied to the book, and this prevented the flexibility needed. It took fighting and luck to get into a STUDY at Stanford, run by Kiki Chang, to get the thing that finally opened the window to some light and air, some hope and a chance at survival. In our case, it was Lamictal. Lamictal did not “fix it,” but it made a substantive difference in the level of suffering. There was still ANOTHER 8 YEARS OF severe, chronic irritability, lasting most of the day, every day! But lamicatal was the first breakthrough, and I am eternally grateful to Dr. Chang, to his Stanford Clinic and his study, for the help we received there. Of great importance though, is the very first thing Dr. Kiki Chang said to us as we sat down, exhausted, in his office. He said that “we don’t know anything”, that the mysteries of these illnesses are just beginning to be unraveled. Let me repeat: Dr. Kiki Chang literally said that “we [science, psychiatry] don’t know anything.” And THAT is why Dr. Chang has been able to make a difference, that attitude and honesty in approach to the study of brain science. I cannot understand why he does not support this addition to the DSM and I will be trying to reach him to find out. How can adding this diagnostic option, as one of you posted, be “a serious mistake that's of disservice to children and adolescents -- and the parents who struggle to support them... it's of great concern to me that the proposed DMDD does not address in any way the cyclical nature of the symptoms so many parents (and professional providers) see in these children.” I have read volumes on Bipolar Disorder, and I know that this is different. There are virtually NO breaks ever in the extreme irritability. The child is living in a beehive and the stinging is every day, all day, most days. Compared to most BP kids, and adults, it IS a different animal. Apples and oranges are both round and both are fruit. But different. Similar IN IMPORTANT WAYS BUT NOT THE SAME. The more those physicians are tied down to limited diagnostic possibilities, the more children and families will suffer. Flexibility IS an improvement. Several times in the duration of the study we were in, I heard from Dr. Chang the same thing I so many times heard during this long painful odyssey: “I’ve never seen THIS before.” He was and is at the leading edge of his field, and had diagnosed BP in this child, but still there were things he did not recognize. Certainly teachers said this a thousand times, but the mental health professionals said it too. “I’ve never seen this before.” “I’ve never had a child like this in my class.” “I don’t know how to help her.” I hope that Dr Chang will reconsider his opinion on this proposal. I hope, 8 years later, that he still has the humility and flexibility that has made him a great scientist in this field. I wish he would rename his clinic as a MOOD DISORDER clinic, if the current name builds rigid walls to keep out new possibilities. All of these diagnoses are on a continuum, related, they are all brain dysfunction. BP1, BP2, Ultra-rapid-cycling…are all somehow related. All of these children and young adults are immeasurably brave and heroic. They are amazing individuals. And when they are bleesed with devoted, intelligent and educated physicians, they are very lucky. But even the best of these professionals are in the trenches with us for short periods of time, while we are in there with our howling children 36 hours per day, year after year. We each know what we see, and our voices, ALL of our voices, are critical too, to the progression of psychiatric science and the lives of so many children.

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Cathy, 56
22 year old daughter NOTE: the proposed new diagnoses of Disruptive Mood Dysregulation Disorder (DMDD) fits EXACTLY, much more so than BP2. For my daughter, DMDD is REAL. Since the DSM diagnoses drives treatment and research as well, i URGENTLY hope this proposal is accepted.
Lamictal 400 mg, Lithium 600, Seroquel 150 and titrating down slowly.
Misdiagnosed at age 7 with unipolar depression and treated with Paxil; re-diagnosed BP2 and ADHD at age 13. Possible atypical seizure disorder
Dogs Hailie and Diva PTSD...lol
married 30 years to dh Steve
Catherine@perrywest.net

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I do not know what the value of this is because it is not clearly described. And I would like to understand in what exact way this new description is going to help children get what help they need and also have their parents' insurance cover that help.

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Louise

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My daughter suffered from extreme irritability and rages from the time she was young. Every year it got worse. By the time she was 11, her moods ranged from animal like rages with violence and destruction to suicidal depression with chronic severe irritability in-between. I never knew that a child who had not experienced any abuse or neglect could suffer so horribly. I was desperate for answers to help her but I didn't know how. We tried every med we could and hospitalizations with little success. No one could tell us what was wrong or how to treat it.
We knew she wasn't bipolar or had ordinary depression. For years I thought she had her own illness that no one else had and I had no idea how to help her.One child psych on the west coast where we lived said that if we lived back east, they would label her as bipolar but not on the west coast. He said if there was a diagnosis in the DSM-V for what was then being called Severe Mood Dysregulation, that that is what her diagnosis would be. I finally felt some hope for a real diagnosis when I saw the research being done at the NIMH. She is 17 now and her rages are gone but she suffers from Major Depressive disorder, anxiety disorder and anoxeria. She is smart and brave and kind and has gone through so much suffering in her young life. She is my hero. I am hoping and praying that DMDD will be included in the new manual so other families can get answers and help through research and funding and support. The suffering this illness causes to children and their families is real and horrible.
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Kriste

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I appreciate Susan Pesko's balanced and diplomatic comments on the controversy about the proposal to add the new diagnosis of DMDD to the DSM-V. However, calling an addition that many top-notch experts oppose is not an "improvement" to the DSM-V; approval of this diagnosis would be a serious mistake that's of disservice to children and adolescents -- and the parents who struggle to support them.

At a meeting for parents just last week, Kiki Chang, MD, Director of the Pediatric Bipolar Disorders Program at Stanford University, disputed the proposed DMDD diagnosis; the very name of this respected program at Stanford in itself indicates the inappropriateness of the new diagnosis. I don't want to speak for Dr. Chang or for his clinical and research staff, but it's of great concern to me that the proposed DMDD does not address in any way the cyclical nature of the symptoms so many parents (and professional providers) see in these children.

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This new Dx sounds EXACTLY like my daughter and most of her childhood/teenage years. Irritible, irritible, endlessly grouchy, picky, quick to anger and IRRITIBLE! She was finally stabalized with her meds around age 17. I sayYES to this new possible Dx for children and teens! She had weekly counseling the entire time, age 9 - current age 21. 7 hospitalizations in 10 years. She is about to complete her first college course in Dec. and is signing up for 2 classes for the spring! Her bipolar Dx qualified her for Disability and Medicaid, and she is in local subsidized housing. She did not want to live home, and determinedly waited for two years to get a subsidized apartment, and luckily now lives quite close to us. CT DMH program for ages18 - 24 has given her access to a psychiatrist, therapist, group therapy and help finding a job and signing up for college classes when she needed it. They helped transport her to therapy, which felt to me like a Direct Miracle from God. They helped her learn to ride the city bus and helped her budget and pay her bills on her own. We are SOO proud of her, with her determination to be independent of us, and now striving to be independent of Disability/Medicare by getting training and college classes. Parents and Gaurdians, please keep the faith! Keep trying and fine tuning the meds your Dr. Recommends and keep going to talk therapy, even if its just for you to talk through it all. Keep believing that some of it is bipolar or whatever Dx, but some of it is normal immaturity and risk taking on your kid's part. They will grow in maturity and get their meds right eventually if you keep working on it. DONT give up. Be alert to suicide threats, self harming and possibilities of any substance abuse, which can be another wrench in the works, but not impossible to deal with. One Amazing Doctor predicted that she would go to college, just later and slower than her peers. He was exactly right. Don't give up or let your kid think you are giving up. If you keep pressing forward and staying positive now, they will learn to do the same and stay positive later on. Your stubborn resolve now, will become their own determined resolve later on. I never dreamed in a million years my daughter would call me up on the phone just to chat for fun. Or go out to dinner with me for fun. But she survived the hardest childhood I could have ever imagined and is thriving now. Parents, you can survive it and they CAN find a good independent life. Keep the faith! I am not a doctor or therapist, just a Mom, but I would be glad to exchange emails with anyone who is going through this. It was total hell and I cried in despair more times than i can count, but it can work out. Email me if you want to chat more: DebiT4rls@aol.com

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This sounds kinda like Borderline. Wouldnt you guys think???? I have borderline and I can get very irratble and angry at times. Seriously it seems like now a days there putting every little thing into a disorder. Every little thing is going to be considered a disorder which is wrong. This sounds like borderline .What do you guys thinlk????

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I'm confused. My son (now 18, diagnosed at 6) is irritable a lot of the time, has angry outbursts frequently, but also has periods of giddy elation -- and all within a single day. We were calling it acute early-onset ultra-rapid-cycling bipolar disorder. Is that diagnosis now eliminated in favor of the new one? And what if the child doesn't meet all the criteria of the new one? It feels like we have a broad swath of children with severe mood disorders who still don't fit anywhere.

Did any of the mental illness experts ever consider "acute early-onset mood disorder" as a category? Why do we have to be so specific? Our kids are a very heterogeneous group.

Christine
Mom of Peter (18), adopted from India at 6 months of age, and his older sister (22) and brother(25), also from India

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Good question, Claudia! I was wondering the same myself. My DS exhibits ALL of these characteristics. He right now is dx with ODD, mood disorder, and Asperger's. The "mood disorder" is being treated as bipolar but the pdoc is hesitant to dx it as such because DS is only 10 and she does not want to label him. I must say he is like Dr. Jekyl and Mr. Hyde - very irritable and always quick to snap. There have never been episodes of depression or mania that I can out my finger on. --

KELLY - 33, MOM, MARRIED 12 YEARS TO AN AWESOME MAN , AND FULL TIME EMPLOYED AS A COUNTY WELFARE ELIGIBILITY WORKER, GENERALIZED ANXIETY DISORDER, LOW DOSE BUSPAR 3 TIMES DAILY.

HENRY, DH, 42, WONDERFUL HUSBAND AND DAD WHO WORKS NIGHTS AND WEEKENDS TO SUPPORT US, BUT AS A RESULT LEAVES ME PRETTY MUCH ALONE WITH THE KIDS ALMOST ALL THE TIME WHEN I'M NOT AT WORK (THANK GOODNESS FOR MY MOM WHO WATCHES THE KIDS AFTER SCHOO

ANTHONY, DS, 10, HIGH IQ (BEEN TESTED), AWESOME GRADES AND HONOR ROLL, VERY LOVABLE AT HIS BEST, MOOD DISORDER (BIPOLAR NOS), ODD, OCD, ASPERGER'S - LAMICTAL EVERY MORNING AND NIGHT

MADELEINE, DD, 8, SO SWEET AND SOCIAL, BEAUTIFUL TAP DANCER AND BUDDING FASHIONISTA (LOL), EXPOSED EVERY DAY TO DS'S BEHAVIORS AND MOOD SWINGS AND LEARNING TO DEAL WITH THEM. GETS HER FEELINGS HURT OFTEN BY DS.

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Thanks for the info! My 12 year old was diagnosed with bp but doesn't really have the mania. She does have bouts of depression but the big issue is chronic irritability. 3 1/2 years now with no breaks in that irritable mood. She is volatile and rages at least 2-3 times a week. Sounds like this new category would fit her well but I am not sure what that does for her in terms of treatment. Nothing has been very successful for us with meds or CBT.
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Lisa Andrews

DD,12, BP-NOS, DX 4/2011, Abilify, Clonodine, homeschooled due to severe anxiety and learning issues (dyslexia, ADHD)
DD, 14- Anxiety - no meds
DH - BP - no meds

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Would DMDD be considered a disability, as bipolar disorder is, for the purposes of social security and medicaid?

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Just because you have a mental disorder doesnt mean you are disabled and should be on social security. I have a mental disorder I refuse to be on social security IT IS NOT A DISABILITY. Yes sometimes it makes it hard to do things but every one has something in life like ex stress which makes it hard to function.

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Claudia,

Good question! But, its too soon to tell. But, given that the illness is categorized as very severe, one would hope that it would be considered a disability. But, since its not an official diagnosis yet, we need more time. We will watch for these developments and ask our families voice their opinions with the appropriate authorities when the time arises.

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Susan Resko
Executive Director

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hi...
I read your post this post was really nice and informatical I am just looking for this type of post that explore my knowledge.
thanks

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