Helloooo Temper Dysregulation Disorder with Dysphoria

Last night, after hearing and reading this story on NPR, I've been carefully reading through every document concerning TDD at the DSM-V site.  Is that enough acronyms for one sentence?

The new rules are eventually going to have huge implications for children in foster care or adopted from foster care.  These kids are the always the ones that get the most diagnoses and the most medications.  They're really the front line... or more cynically stated, they're the guinea pigs.  The NPR article doesn't address the issue of children in foster care, but they do provide a good summary of the importance of the DSM-V.

Doctors faced with kids struggling with explosive moods felt the diagnosis was appropriate and said that the bipolar medications they gave to children worked. Research psychiatrists worried that the children were being given a label that wasn't right for them, and saddled with the sentence of a serious mental illness for the rest of their lives.

In a move that could potentially change mental health practice all over America, the American Psychiatric Association has announced that it intends to include a new diagnosis in its upcoming fifth edition of the Diagnostic and Statistical Manual — and hopes that new label will be used by clinicians instead of the bipolar label. The condition will be called temper dysregulation disorder, and it will be seen as a brain or biological dysfunction, but not as a necessarily lifelong condition like bipolar.

The DSM is the official dictionary of mental disorders recognized by the American Psychiatric Association. Doctors use the DSM to diagnose patients, and insurance companies use it to decide on reimbursement, so it's incredibly important in the profession of psychiatry.
By adding this new entry, the American Psychiatric Association is trying to use the considerable institutional power of the DSM to curb use of the pediatric bipolar label.

I'm cautiously optimistic about these changes.  I realize that the process of making these diagnoses is sort of like asking a blindfolded person to draw a line using fingerpaint to encircle a seemingly random scattered pattern of symptoms... projected onto a moving target.  But in this case, that line might be drawn slightly more accurately than the previous one.

Here are the new criteria for TDD - Temper Dysregulation Disorder with Dysphoria.  Sunny, when off medication, fits every single criteria.

Temper Dysregulation Disorder with Dysphoria

A. The disorder is characterized by severe recurrent temper outbursts in response to common stressors.

1.  The temper outbursts are manifest verbally and/or behaviorally, such as in the form of verbal rages, or physical aggression towards people or property. 

2.  The reaction is grossly out of proportion in intensity or duration to the situation or provocation.

3.  The responses are inconsistent with developmental level.

B. Frequency: The temper outbursts occur, on average, three or more times per week.

C. Mood between temper outbursts:

1.  Nearly every day, the mood between temper outbursts is persistently negative (irritable, angry, and/or sad).

2.  The negative mood is observable by others (e.g., parents, teachers, peers).

D. Duration: Criteria A-C have been present for at least 12 months.  Throughout that time, the person has never been without the symptoms of Criteria A-C for more than 3 months at a time.

E. The temper outbursts and/or negative mood are present in at least two settings (at home, at school, or with peers) and must be severe in at least in one setting. 

F.  Chronological age is at least 6 years (or equivalent developmental level).

G. The onset is before age 10 years.

H. In the past year, 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 for most days, and the abnormally elevated or expansive mood was accompanied by the onset, or worsening, of three of the “B” criteria of mania (i.e., grandiosity or inflated self esteem, decreased need for sleep, pressured speech, flight of ideas, distractibility, increase in goal directed activity, or excessive involvement in activities with a high potential for painful consequences; see pp. XX).  Abnormally elevated mood should be differentiated from developmentally appropriate mood elevation, such as occurs in the context of a highly positive event or its anticipation.

I.  The behaviors do not occur exclusively during the course of a Psychotic or Mood Disorder (e.g., Major Depressive Disorder, Dysthymic Disorder, Bipolar Disorder) and are not better accounted for by another mental disorder (e.g., Pervasive Developmental Disorder, post-traumatic stress disorder, separation anxiety disorder). (Note: This diagnosis can co-exist with Oppositional Defiant Disorder, ADHD, Conduct Disorder, and Substance Use Disorders.) The symptoms are not due to the direct physiological effects of a drug of abuse, or to a general medical or neurological condition.

When he's on his medication, he only has 0-3 violent fits a week.  Off medication, he had 1-2 every day.  On medication, he's happy most of the time, except for his rarer crabby days when he seems irritable and looking for an excuse to argue, cry, fight or have a fit.  Off medication, he's irritable and miserable most of the time.  On medication, he's been doing well in school; off medication, we had to temporarily take him out of school so that he wouldn't hit his teacher.

I think he also has anxiety issues and trauma separation issues and ADHD issues, but these don't fit his pattern of behavior nearly as well as the TDD definition. 


Now that the TDD definition is in place, some serious studies can be done that show long-term outcomes and medication appropriateness and so on.  But reading through the summaries of the existing studies, I'm optimistic that what he has will ameliorate as his brain matures, and that he won't have to be on medication for all the rest of his childhood.  Right now, Sunny's atypical antipsychotic medication is working for him, and we're not going to try to take him off it again until next year.  We're just going to keep trying every year and hope that the therapy and the work that we've done between those times will eventually allow us to do so.

I like the fact that the discussion documents stress that TDD is not at all less serious than "real" childhood bipolar.  Children with TDD end up in RTCs quite frequently.  I could imagine that happening with us. Without his medication, Sunny a) would not be able to go a regular classroom b) would need one of us to stay with him constantly and be prepared to restrain him multiple times a day.  Very few people could handle that.  I don't know if we could handle that.  An older couple with less physical strength definitely could not handle that.

The documents also discuss some of the social ramifications of these disorders.  Childhood bipolar overdiagnoses started partly as a well-meaning response to stigma around Conduct Disorder.  If your child had Conduct Disorder, they were a Bad Kid (and/or you were a Bad Parent) and there wasn't really much anyone could do.  If they had childhood bipolar, they had some genetic or chemical bran imbalance and it wasn't their fault and it wasn't your fault either, and it could be fixed with the right pill.  Kids won, parents won, drug companies won... but it turned out this wasn't such a happy ending.

I do feel lucky that we've ended up in a situation where Sunny is on a medication that really helps him and doesn't give him any side effects (so far), and that we've finally found a therapist, on our fourth try, who's actually helping him get a grip on his behavior.  I know a lot of other parents aren't so lucky.

I'm still frustrated with the fact that I don't really understand why Sunny's med works for him, and why it doesn't work for kids with similar issues.  And, of course, I'm terrified that it's going to cause some kind of long-term issue, sort of like that Halloween III: Season of the Witch movie where the demon masks make the kids' heads explode.

Anyway... hello TDD! Nice to meet you.  I'm sure we'll be hearing a lot more from you soon.