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

Making Sense, Part B

Before I venture into things like if and how the previously mentioned (see Making Sense, Part A) devices and methods work, the promises they may or may not hold, etc., let's start with some definitions.

Note: What follows is based on stuff I was able to readily grab from the Web. I haven't critically reviewed it or made much effort to make it my own. Ergo you ought to look at these as provisional, i.e., tentative. At best. 

*  *  *  *  *

• Benik vest: a neoprene orthosis that's meant to provide upper trunk support (to help a child remain in a sitting position, for example, for an extended period of time) and proprioceptive input. Available with malleable aluminum stays or moldable thermoplastic panels for additional support and protection. [ www.benik.com ]

• Kinesiology tape (more generally known as elastic therapeutic tape): a cotton strip with an acrylic adhesive used for treating athletic injuries and a variety of physical disorders. For our purposes, the product is used therapeutically to facilitate underused muscles or to limit or encourage a specific motion at a joint.

• TheraSuit. NeuroSuit. PediaSuit: a breathable, soft, dynamic orthosis based on the Adeli Suit. Consists of a vest, shorts, knee pads and specially adapted shoes with hooks and elastic connectors that topographically mirror flexor and extensor muscles, trunk rotators and the lower limbs. The suit works as an elastic frame surrounding the body to hold it in proper physical alignment. It also serves to facilitate or inhibit certain movements, assist with the development of optimal posture, help with or supplement the restoration of proprioception, and provide resistance (to increase the strength of the patient).

• Compression sportswear: form-fitting garments usually worn by athletes. They may be shorts, tights, t-shirts, socks, sleeves or underwear and are often made from a spandex-type material. Among other things, these purportedly reduce muscle movement and vibration, and focus the direction of the muscle.

• SPIO (Stabilizing Pressure Input Orthosis): a dynamic bracing system made of a special Lycra blend material that provides a multi-directional stretch with a strong rebound factor. Uses patented compression ratios and design. SPIO is designed to assist stability and provide feedback through deep pressure and tactile stimulation. Advertised to improve functional movement possibilities, limb and body position sense, and general stability and balance.[ www.spioworks.com ]

• TheraTogs: "a live-in exo-muscular system". Made from a patented, proprietary material with an inner foam layer that grips the skin and underlying soft tissues, and a Velcro-sensitive outer layer to which clinicians can affix elastic strapping, a.k.a., the external muscle of the system. Typically worn under normal clothing, TheraTogs replicates successful manual sensorimotor training techniques and enables the wearer to engage in routine activities with improved joint alignment, all day long. [ www.theratogs.com ]

• Wearable robot: a neuroprosthetic device that will allow paralyzed patients to use a BMI (brain-machine interface) to control movements of a full-body exoskeleton. Motor signals will control actuators distributed across the joints of said exoskeleton. Force and stretch sensors distributed throughout the exoskeleton will generate a continuous stream of artificial touch and proprioceptive feedback signals to inform the patient's brain of the device's performance. As for the details of the silk-thin suit itself, I'm having a hard time finding any. I'll keep my eyes open.

*  *  *  *  *

There. We're makin' progress. Some pictures are probably in order soon.

Making Sense, Part A

When my daughter's physical therapist showed me a Benik vest this past Monday, my mind made all kinds of associations -- with:

• compression garments worn by elite athletes; 
• KT (Kinesiology Therapeutic) tape; 
• the "suit" method;
• this passage from Beyond Boundaries (2011) by Duke U. neuroscientist Miguel Nicolelis:

Unraveling the brain's intricate workings by building advanced BMIs (brain-machine interfaces) will lead to the development of amazing new therapies and cures for those afflicted by devastating neurological disorders. Such patients will be allowed to regain mobility and the sense and feeling in an otherwise lame body through a variety of neuroprosthetics, devices the size of a modern pacemaker that harvest healthy brain electrical activity to coordinate the contractions of a silk-thin wearable robot, a vest as delicate as a second skin but as protective as a beetle's exoskeleton -- a suit capable of supporting a paralyzed person's weight...

How come those (four [4]) connections? What underlying things do they have in common? More importantly to me: What hopes might said devices / methods hold for improving the lives of kids like my daughter, and for -- in Nicolelis' words again -- enabling formerly immobile bodies to roam, run, and once again exult in exploring the world freely? 

I want my daughter to exult. 


I am therefore fixin' to make sense of these things. And to report back.

What Wikipedia Says

Given what (still relatively little) I know about physiatrists, I think Wikipedia’s definition will do just fine. Physiatrists are physicians who: 

“specialize in restoring optimal function to people with injuries to the muscles, bones, tissues, and nervous system.” Their emphasis is on the “optimization of function through the combined use of medications, physical modalities, physical training with therapeutic exercise, movement & activities modification, adaptive equipment and assistive device, orthotics (braces), prosthesis, and experiential training approaches.”

A pediatric physiatrist applies the above treatments in attempts to further an individual child’s development and daily function, from bathing and dressing to communication and mobility. The ones I'm most interested in maintain a clinical focus on cerebral palsy and spasticity management. They work closely with pediatric neurosurgeons, neurologists, neuropsychologists and developmental-behavioral pediatricians as needed,  and "fill in the gaps" between neurology, orthopaedics, and general medicine.


Their emphasis seems to be on function, non-surgical care, and on treating the whole child (as opposed to just his or her problem area).


More to come.