Disruptive Modd Dysregulation Disorder

[mdmom]

Here's a link to the WSJ article in today's issue:

 

http://online.wsj.com/article/SB10000872396390444273704577633412579112188.html

 

 

 

Why is it so easy to get a new mental illness disorder listed as a real diagnosis and PANDAS/PANS still doesn't have an ICD-9 code?

 

This infuriates me.

 

 

edit: sorry about the misspelling in "mood" - I can't figure out how to edit the topic line

Edited October 19, 2012 by mdmom

[MomWithOCDSon]

No kidding.

 

And as if finding a new "label" to stick on kids is in any way helpful with respect to treating them, medically or mentally.

 

Is it easier to get "new" "mental" disorders into the DSM because everyone readily accepts that these are necessarily "clinical diagnoses," whereas, with medical conditions, they're less ready to accept the "clinical" diagnosis over a strictly, test-driven "diagnostic" one?

[kos_mom]

Your link didn't work for me. I found this one:

 

http://online.wsj.com/article/SB10000872396390444273704577633412579112188.html

 

Nancy raises an interesting point. It is indeed easier to get a new dx into the DSM because of clinical reliance. At some level, dx of PANDAS/PANS also relies on the clinical picture. Why should we not be trying to get it into the DSM instead of trying to get it recognized as a new medical illness or accepted variant of an existing one like Sydenham's? The symptoms are similar to other illnesses in the the DSM and the entry could note the applicable tests and best course of treatment--abx, IVIG etc in coordination with other medical doctors from immunology, neurology etc. and then describe the psychiatric standby supplemental treatments--SSRIs, anti-psychotics, ERP.

 

Psychiatrists are treating these kids and in some cases very expertly--Dr. M, for example, and Dr. G. Psychiatrists may be way more open to this illness and getting it into the DSM would provide good ammunition for dxing by the frontline people who see these kids--pediatricians, counsellors, and therapists, in addition to psychiatrists--and, more importantly, pave the way for more kids getting appropriate treatment.

 

There is no rule that I am aware of that only disorders that can be treated with psych drugs and therapy can be included in the DSM. PANDAS/PANS is a lot more real than this vague sounding Disruptive Mood Dysregulation Disorder. Maybe some of the kids identified with this actually have Pandas....

 

I know there are those out there who might not like this idea because they want it identified as a medical illness, not a mental illness. But the more I think about it the DSM route looks much more winnable and pragmatic than trying to convince masses of skeptical nonpsychiatric doctors who think our kids have some mental illness (they decline to specify which one) that we are not willing to accept. And in the end, guess who's done the work on this? Not the NIH but the NIMH>

 

Would enjoy someone poking holes into this line of argument.

 

Ko's Mom

[LNN]

I'm not weighing in on the Pandas issue - preaching to the choir, I suspect. But for those of you who've found success with methylation - read the WSJ article and tell me if this doesn't describe your kid?? OMG - this was my daughter. Do I want her to carry this label? No, not particularly. Do I want people looking into this proposed label to look at MTHFR? Absolutely.

 

Here's a link to the Balanced Mind Foundation's position: http://www.thebalancedmind.org/connect/blog/2010/02/what-is-the-dsm-v-and-why-does-it-matter-to-you

 

If this strikes a chord, consider contacting BMF with your thoughts on MTHFR and how treatment has helped your child. Here's a chance to give voice to methylB9 as a preferable treatment over bipolar meds.

[nicklemama]

This is nothing more than a description of behavior much like ODD and IED (Intermittent Explosive Disorder). It doesn't really get to the heart of what the problem actually is. My DS was diagnosed w/ IED by a psychiatrist. His therapist told me its really nothing more than a description of behavior. This new diagnosis really fits a lot of PANDAS/PANS kids.

 

Until we have a verified and accepted therapy, having an ICD code does us no good and may, in fact work against us for IVIG. Currently, doctors can code things like post infectious encephalopathy and immune dysfunctions for some PANDAS kids. If we have an ICD code w/out an accepted therapy, those doctors will have to code for PANDAS and it may interfer w/ a lot of kids being able to have their insurance pay for IVIG.

 

I am less worried about getting an ICD code than I am about getting a verified therapy to treat PANDAS. The bigger worry is getting a wrong diagnosis like bipolar, ODD, IED, or the new Disruptive Mood Dysregulation Disorder.

[kos_mom]

obviously, any strategy that would limit access to IVIG would be a bad outcome! Was thinking though that having Pandas in DCM--along with all the appropriate treatment options--would limit Pandas/Pans kids from getting all those squirrely other dxes in the DSM.