My Kind of IT: Continued

Back to drilling down into this 2004 passage: “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.”...

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It’s my impression that "intensive therapy" (IT) has become almost synonymous with the suit method, which is characterizable by its use of an Adeli-type suit and Universal Exercise Unit (UEU; also known as a "spider cage"). My views, therefore, about whether or not IT might benefit my daughter are informed largely by evidence put forth by the various suit therapy clinics* out there. 

In their efforts to get me to buy in, these places seem to be employing more-or-less the same “tools of persuasion”:

A big lead-in: “The use of intensive suit therapy is spreading like wildfire as all interested parties are seeing out-standing, if not a-stounding, results!”  

Anecdotes /testimonials: success stories about kids who’ve gone through the therapy

Videos: showing one or more suit-equipped kids in action, in the UEU

Theories: statements explaining how intensive therapy is supposed to work 

Lists of purported benefits: exhaustive lists (exhausting to read) of what IT will: fix, improve, normalize, correct, increase, decrease, or promote 

Studies of various sorts: see next

I've been on the lookout for more studies**. Of the relatively few I've come across, the reviews have been mixed. Some conclude that suit therapy works and helps (e.g., Effect of Modified Suit Therapy in Spastic Diplegic Cerebral Palsy, India, 2010). One other concludes that “further investigation is needed of the suit itself, and intensive therapy programs in children with CP” (Bailes; 2011 ). Others contend that there’s not enough evidence to support routine use of the suit method. (e.g., Taylor; 2006) 

Nothing about the whole lot of 'em really stands out to me; nothing touches my memory. The thought that “that’s powerful evidence” one way or the other has never crossed my mind. If anything, there's the nagging concern that the rosiest reports seem always to stem from therapists with vested interests in the method's success.

I could see how designing a suit therapy study would be challenging. Maybe it'll turn out anecdotes are the best we can hope for? Maybe studies aren't what we need? Where is all this heading? I don’t have a clue.

So, for now, I keep falling back on two things:

• I find the theories (regarding how the method should work) to be plausible. 

• Suit-method centers, or clinics, are now commonplace, if not ubiquitous.  You find them within UCP facilities, private therapy clinics, and ICF /IIDs (Intermediate Care Facilities for Individuals with Intellectual Disabilities). I know of five (5) within a few hours of me in Ohio. See details below.

The method is now finding a place in hospital settings, too. We have Cincinnati Children’s Hospital Medical Center offering it here. I just read about All Children’s Hospital in St. Petersburg, FL... 

Wouldn't a hospital clinic have to have good, research-based reasons for giving suit therapy a go?

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THINGS ASTERISK-ED

*What I know about most of these clinics comes primarily from their web sites. I haven’t spent as much time on their Facebook pages. It could easily be that they’re putting more of their communications resources there.

**If you know of other noteworthy intensive therapy research, I'd love to hear about it.

*** Therasuit LLC claims that "since 2002, we have trained thousands of therapists and helped create hundreds of intensive therapy centers in the United States.” Disappointingly, but not surprisingly, when I clicked on a link for a listing of those clinics, I was met with the all-too-familiar: “File or directory not found.”

SOME IT CLINICS IN OHIO

Leap Beyond Therapy / Milford, OH / www.leapbeyondtherapy.com

AbiliKids / Brunswick, OH / www.abilikids.com 

Achievement Centers for Children / Highland Hills, OH / www.achievementcenters.org 

UCP of Greater Cleveland / Cleveland, OH / www.ucpcleveland.org

Hattie Larlham Center for Children with Disabilities / Mantua, OH / www.hattielarlham.org

Making Sense, Part E

Much of the language used to describe the material properties of the orthoses on our list revolves around “force” words: Pressure. Rebound. Compression. Stretch. Resistance. An orthosis mechanically compensates by changing the outside forces acting on a body, or body part. I suppose that's its primary function.*

In our case, we have...

Six (6) different orthotic devices, six (6) different force-related profiles. For some reason my mind wants to lump 'em into two (2) categories:

1. Those that are primarily compression devices. A Benik vest, elastic therapeutic tape**, compression sportswear, and SPIOs all work based on (the application of) uniform pressure.
   
2. Those that biomechanically guide in addition to compress. With these you get more push and pull, and you get the ability to vary and pinpoint forces -- all thanks to the use of specialized connectors. (TheraTogs employ elastic straps that "Velcro back" onto the garment itself. The TheraSuit incorporates elastic bands. When the latter is used in conjunction with a Universal Exercise Unit, the wearer may be exposed to higher-load forces.)

Another distinction comes to mind, something to do with duration. Each of the primarily-compression-devices, along with TheraTogs, provides a prolonged force. They can be worn all day. A TheraSuit, on the other hand, is designed for shorter bursts of work.

So we have these devices that represent different strategies for influencing, altering and manipulating forces. To what ends? What purposes do their functionalities serve? What good can compression and biomechanical guidance do for kids with CP? 

See next post.

*To allow the skin to "breathe" could be considered a secondary function, and one that speaks broadly to comfort. (which, obviously, has to be taken into account)

**doesn't fit very neatly into this category, I realize 

Making Sense, Part D

By “give more shape to…a disordered product landscape” I mean look for ways to group and classify the on-body devices I've been referencing since Making Sense, Part A. 

Here’s a listing of said devices: 

1. Benik vest 
2. elastic therapeutic tape 
3. TheraSuit (a.k.a., PediaSuit and NeuroSuit)
4. compression sportswear 
5. SPIO (Stabilizing Pressure Input Orthosis)
6. TheraTogs
7. wearable robot 

What are these things? Can we make broad generalizations about their forms and functions?

One of the first things to jump out at me is the fact that these are orthoses, devices designed to “support or correct the function of a limb or the torso.” All but one of 'em, that is. The wearable robot, as conceived by Miguel Nicolelis, has orthotic properties but it's more of a neuroprosthetic device. I’m going to de-list it now for that reason.

Let’s focus, then, on the first six devices -- starting with their forms, i.e., their physical characteristics, and looking for common threads.

Threads.
Hmm...
Fabrics.

These are technical textiles. Maybe homing in on their MATERIAL makeup could help us make sense? Here are some key words and phrases associated with each: 

1. Benik vest: vented neoprene; Terry lined; thermoplastic or aluminum panels 
2. elastic therapeutic tape: cotton strip with adhesive back 
3. Therasuit: breathable; soft; dynamic; hooks and elastic connectors 
4. compression sportswear: form-fitting; made from spandex 
5. SPIO (Stabilizing Pressure Input Orthosis): Lycra; dynamic and multidirectional stretch 
6. TheraTogs: inner foam layer; Velcro sensitive outer layer for affixing elastic strapping

Generalizing: We’re talking about things that are breathable, that have elastic--stretchy--rebound--compression--characteristics, and that, in a couple of cases, have the capacity to have other stretchy things attached to them. 

What about SIZES and SHAPES? Over which areas are they applied?  

1. Benik vest: whole trunk/ torso 
2. elastic therapeutic tape : supplied in rolls and can be applied practically anywhere
3. Therasuit: can cover whole body if all components (e.g., optional arm attachments) are used 
4. compression sportswear: shorts, tights, t-shirts, socks, sleeves and /or underwear 
5. SPIO (Stabilizing Pressure Input Orthosis): up to full-body coverage
6. TheraTogs: also up to full-body coverage

I made an earlier connection between these devices and a pair of hands. Hands have their own material and size-and-shape properties. The fact, for example, that I used to be able to safely align my daughter’s trunk using both hands -- but now that she's twice as tall, I can't -- is a SIZE thing. The fact that my hands can make subtle, real-time adjustments relative to her place in space is a more of a MATERIAL thing.

What am I getting at? Orthotic devices are like hands, but they're different. They’re different than things we call "clothes". They’re different than body casts. They're different than tattoos and other stuff with which we adorn ourselves.

Form follows function. 

Trying to make sense of the functions these forms serve will be the subject of the next post.

Making Sense, Part C

SO:

We’ve got these nouns-with-modifiers: a Benik vest, elastic therapeutic tape, the so-called suit method, and so on. What, if anything, do these have significantly in common? 

For one, they’re proffered and promoted as helpful for kids with CP -- which is quite a claim. I should say right off the bat that the couple of PTs I know aren't as "gung ho" as the marketers of these products are about the promises they hold. Nor am I completely sold either, especially after reading some pretty un-scientific explanations as to how they work.

NEVERTHELESS:

I’m willing to suspend disbelief and be open to the possibility that one or more of the above products could make a difference. Why? Primarily due to something I've experienced firsthand while trying to help my own daughter. 

SPECIFICALLY: 

Some time ago I recognized that when I immobilize my daughter's shoulder girdle she’s able to consistently pick her head up. Fairly easily. I don’t know all the mechanisms involved* but I'd bet there's a basic biomechanical explanation along the lines that I must be supplying some (compensative) force that she hasn’t figured out yet how to supply on her own.

Shouldn't it follow, then, that these devices -- also external to and in contact with the body -- could do the same work as a pair of hands in helping a child move and/ or support herself? It seems worth looking into. And worth trying to give more shape to what strikes me as a disordered product landscape.

That to follow.

* I’m sure there are lots and lots of people who could explain. Any wise physiatrist, for example. Or the folks behind the Rifton Elbow Anchor…

You Say Educational. I Say Therapeutic.

You probably shouldn’t beat yourself up too much if you’ve erroneously lumped (1) Conductive Education and (2) MOVE [ Mobility Opportunities Via Education ] together with (3) the so-called “suit” method. Why? Because, although (1) and (2) are education methods and (3) is an intensive therapy method, there are still some significant common grounds*. 

Each of the three methods, for example:

• is founded on faith in the power of our amazing brains to CHANGE as a direct result of experience
• emphasizes REPEATING MOVEMENTS, in general, and providing MANY OPPORTUNITIES TO PRACTICE FUNCTIONAL SKILLS like kneeling, sitting and standing, in particular
• has its own characteristic way of keeping the body in CORRECT ALIGNMENT during activities
• strives to DECREASE UNWANTED REFLEXES
• has an INTENSIVE component, i.e., incorporates some element meant to heighten or amplify the student’s or patient’s experience for purposes of driving motor skill acquisition 

*based on stuff I’ve informally gathered.

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. 

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• 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.

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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.