is all OCD PANS?

[ibcdbwc]

Was recently going back in time and found a post from Nancy that I know has been discussed before but I still have trouble wrapping my mind around this. Though we have strep as a trigger there are times that my ds11 will flare for other reasons I think-- most notably allergies I'm guessing. So while I know PANS encompasses all such triggers, how is this pattern really any different from "regular OCD." Could it be that all OCD is PANS? He does go from 0-60 when in an exacerbation and he does respond to antibiotics. Is that the difference?

 

http://www.latitudes.org/forums/index.php?showtopic=7485

[MomWithOCDSon]

How presumptuous is it of me to respond to my own, old post?! Wow! October 2010! That feels like a world away now!

 

Here's what I've come to "accept" over the last 18 months, in answer to my own question. If your child responds behaviorally to antibiotics and/or other immune-support responses when OCD "waxes" or "flares," then, yes, I believe your child suffers from some form of PANDAS/PANS/PITANDS.

 

What remains unanswered for me, still, is whether or not all OCD isn't, on some level, an auto-immune response or some sort of combination of auto-immune, microbial, inflammatory and/or genetic response. I mean, if every treating psychiatrist in the U.S. were to give children in their practices diagnosed with "regular OCD" a trial of antibiotics, would a significant percentage of them not be responsive to them? How do you prove a negative, given as giving children with OCD an antibiotic as a first line of response is not common protocol?

 

Our psych now says that persons with all ilks of mental illness experience "flares" when struggling with a physical illness; she has also noted that people with subclinical mental "tendencies" will often experience "flares" in those tendencies, even sometimes to a clinical level, during physical illness. She's noted, also, that anti-inflammatories and histamine blockers typically have mental components to their activation properties, even in the absence of a clinical "mental illness." She acknowledges all of this, and yet she still holds to the existence of "regular OCD" and "PANDAS OCD." It makes my head swim.

 

Maybe it's just that well-worn paths of diagnoses and treatment protocol are difficult to move away from. Or maybe psychs are intimidated by the idea that their practices could be severely impinged upon by treatment for physical ills, while medical docs are intimidated by the idea that they are treating the "mental" by treating the "physical". Or maybe she's right and there really is some definable difference.

 

Like a lot of other things that I've come to feel/think/interpret/understand over the last 3 years, if anyone at this point were to tell me they knew with absolute, 100% certainty one way or the other, I'd walk the other way. Because I just don't think they know. All of this is such emerging science at present, and the turf wars and politics tend to get in the way of the advances, too. In the end, it's up to us (the parents) to pursue every possible avenue as aggressively as we can because too many on either sides of this imaginary fence (your child has regular OCD vs. your child has PANDAS) will decide that your child is not their problem and meanwhile no one will take ownership of treating your child like a whole person, body, mind and soul, rather than laying claim to the piece of it they specialize in and leaving the rest to waste.

 

I hasten to add, meanwhile, that I think a number of our "PANDAS docs" are defying the status quo in that respect and trying to serve our kids' best interests to the extents their time and talents will allow them. It's just that there aren't enough of them to go around.

 

Sorry for the rant. Stirred up some old feelings, there!

[ibcdbwc]

Ah, I was hoping you would answer your own question! Thanks so much for sharing your perspective as it has evolved over the years.

 

My head swims as well. It is a shame that one must fight the establishment merely to get some clarity on the issue. Why couldn't all psychiatric disorders have root in the autoimmune area? PANS/PANDAS may be really just the very tip of some large iceberg. I understand why MD's might shy away and continue to "do what they know." But as a person based in science I would think they would get very excited about the possibilities. True, psych and general practice would have to merge. Isn't that why so many of us turn to holistic health? Part of the downfall of modern medicine is "the specialist." Very rare do you get someone to look at you as a whole person.

 

It's certainly possible that "regular OCD" could very well be untreated PANS-- perhaps not caught early enough and thus treatment is far more complicated. The typical wax and wane nature of OCD becomes more blurred over time and thus its more of a gentle in and out than a true treatable exacerbation. But I am willing to bet that if you were able to get to the histories-- there would be a dramatic onset at some point in their life.

 

Thanks again for your words. I will keep this pinned as you answered your own question so beautifully!

[MomWithOCDSon]

It's certainly possible that "regular OCD" could very well be untreated PANS-- perhaps not caught early enough and thus treatment is far more complicated. The typical wax and wane nature of OCD becomes more blurred over time and thus its more of a gentle in and out than a true treatable exacerbation. But I am willing to bet that if you were able to get to the histories-- there would be a dramatic onset at some point in their life.

 

 

If you've been to any IOCDF conferences or watched any of the television shows focused on OCD (like "Obsession," for instance), stories do typically include some "moment of dramatic onset." For the adults in the stories, it's typically been the death or terrible illness of a loved one, or some incidence of abuse or criminal victimization. Still, most of the time, these same adults will acknowledge "phases" of anxiety and stress during childhood and adolescence, as well.

 

It does make one think . . . .