Just Asking

My daughter has what could be described as a functional and developmental disorder (cerebral palsy) and I’m inclined to believe from a purely medical perspective she'd be well served – maybe even best served -- by having a pediatric physiatrist in her corner. My confidence about that, however, is shaky.

How come? Well, for one, nobody seems to be making a strong case that that's what I should believe. 

Try Google searching for an authoritative, if not definitive, answer to the question Should my child be under the care of a physiatrist? and you're not likely to find one. Even when you go directly to the sites of those organizations presumably most "in the know," there's nothing straightforward. Nothing from United Cerebral Palsy (UCP). Nothing from American Academy of Physical Medicine and Rehabilitation (AAPMR = the national medical society representing more than 8,000 physicians specializing in the field of physical medicine and rehabilitation, i.e., physiatry). Nothing from American Academy for Cerebral Palsy and Developmental Medicine (AACPDM).

I could take a stab at some of the possible reasons why: Physiatry's identity is still evolving. Where there’s CP there's never a simple answer...

In this case, though, could it have more to do with the fact that there's some sort of communication---public education---marketing gap? That it's a professionally accepted best practice to have a physiatrist on the CP case, but that parents like me aren't being told? Is there a need and opportunity to get the word out? Should one or more of the aforementioned associations exert efforts to do so?

Just asking.

My Kind of IT: Introduction

I want to head in at least two (2) different directions from the following jumping off point:

These studies show that a period of intensive therapy (IT) in ambulatory children with cerebral palsy can lead to improvement in a number of disabilities. However, they did not demonstrate that use of the Adeli Suit was helpful. Any effect is likely to be minor.

That’s from a United Cerebral Palsy Research Foundation fact sheet published way back in November of 2004. Strikes me today as ancient history. I need to get up date and up to speed -- pronto -- about the highlighted part., i.e., about the promise of IT.

1.
 

I want to look at how well-founded that '04 conclusion was or is. Has it been further substantiated? What, if anything, do we know circa 2012 about the benefits of IT and about passing them on to those kids who most stand to gain?

2.

I also want to look at leadership in this arena: How's the work being moved along? Who’s tracking the research? Who's keeping interested parties* apprised? I know at one time there was an intensive therapy association. Last time I searched, however, I came away believing it may be defunct. Is that true? If so, how the heck come?


*parents like me, for example