Elizabeth Thiele Would Know

Not only am I not a physiatrist, I’m not – contrary to what my diploma suggests – much of a scientist, either. I know just enough bio-chem and human physiology these days to be dangerous. Keep that in mind when I tell you:
 
I just came across (great?) news that researchers from Harvard Medical School and the Dana-Farber Cancer Institute have learned how a protein called BAD teams up, in certain instances, with potassium ion cell-channels in the brain to effectively SHUT DOWN THE ELECTRICAL STORM ASSOCIATED WITH EPILEPTIC SEIZURES. Their findings stem from what was known previously of the ketogenic diet (used for years to protect against seizures) and recent experiments tied to the ways in which glucose and fat byproducts are metabolized in the body.

This could represent a BIG, BAD BREAKTHROUGH in that it:

1. Appears to explain the molecular mechanics behind how and why the ketogenic diet works.
2. May lead to the development of new anti-seizure treatments.

The news was to have been published in the May 24 issue of the journal Neuron. I’m anxious to learn how it's been received, one month in.

I have an interest in both the ketogenic diet and something called the low glycemic index treatment (LGIT) -- the latter of which I believe could be a more palatable alternative, literally and figuratively, for my daughter. Elizabeth Thiele, professor of neurology at HMS and director of the Pediatric Epilepsy Program at MassGeneral Hospital for Children, was one of the developers of LGIT. She's also the wife of one of the BAD /potassium pathways researchers. I found this: Researchers Identify BAD as Key Seizure-Suppressing Protein while searching her name.

LGIT is similar to the ketogenic diet in that glucose plays a key role. With the ketogenic diet, you try to minimize the amount of glucose available for metabolism by eating a high-fat and low-carb diet. (using fat byproducts, a.k.a., ketone bodies, to fuel the brain) LGIT, on the other hand, is thought to work primarily via maintaining stable blood glucose levels.

If I’ve got those facts right, I'm wondering now: 

What, if anything, does this new research do specifically for LGIT? Does it validate it? Invalidate it? Offer additional hope? Open up new avenues for improving (the) treatment? 

I’d welcome your input!

CP and IT at Top Children's Hospitals

I perused the Web sites of some of this country’s top children’s hospitals with comprehensive CP programs and looked for references to intensive therapy (IT). I found it mentioned conspicuously at three sites, and vaguely at one more. (Children’s Hospital of Philadelphia) Searches at eleven other sites yielded no hits. I doubt that IT is pooh-poohed or eschewed at the eleven "no hit" facilities, but I don’t know for sure. 

WHY I CARE: I’m trying to learn whether or not IT would benefit my daughter. I’m looking to the top hospital neurology centers for guidance, answers, etc. 

Here’s what they’re doing at those hospitals that clearly are emphasizing IT:   

Cincinnati Children's Hospital Medical Center (Cincinnati): 

Offers a whole “Intensive Therapy Menu of Services”, including, but not limited to: 

1. Constraint Induced Movement Therapy (CIMT) 
2. SPIDER Therapy: OT and PT activities and exercises aimed at helping children develop skills, centered around the use of the Universal Exercise Unit (UEU) 
3. Partial Body Weight Supported Treadmill Training (PBWSTT): Non-robotic LiteGait. Description: Physical therapists use a non-robotic LiteGait to “un-weight” the client in a standing position. By minimizing the client’s weight, the PT can have the client participate in repeated practice of gait training to increase gait speed, endurance, weight acceptance, and gross motor skill. 
4. Partial Body Weight Supported Treadmill Training (PBWSTT): Robotic Lokomat (RoboDOG)  Physical therapists use robotic Lokomat, a “driven gait orthosis that automates locomotion therapy on a treadmill and improves the efficiency of treadmill training.”  See Q&As at the end for more on robot-assisted therapy.

Nationwide Children’s Hospital (Columbus):

Pursuing research studies centered around Constraint Induced Movement Therapy (to determine, for example, the minimum amount of CIMT required to obtain positive results).

Has recently created STRIVE: an intensive motor learning program for children with developmental delay. Description: a 4-week program that entails physical therapy two hours per day, five days per week -- and that incorporates CMIT, treadmill training and more.   

University of Michigan C.S. Mott Children's Hospital (Ann Arbor):

Utilizing “intensive therapy protocols, including Robotic therapy with the Lokomat.”

*  *  *  *  *

*More about Lokomat from Swiss-based medical technology company, Hocoma AG: 

Q: What is robot-assisted walking therapy?

A: Robot-assisted walking therapy is a form of physical therapy that uses a robotic device to help a person whose ability to walk has been impaired as a result of stroke, spinal cord or brain injury, neurological or orthopedic condition, learn to walk again.

Q: How does the robotic device work? 

A: The person is suspended in a harness over a treadmill and the frame of the robot, attached by straps to the outside of the legs, moves the legs in a natural walking pattern. A computer controls the pace of walking and measures the body’s response to the movement. 

Q: How does robot-assisted walking therapy help a person re-learn to walk?

The exact mechanism for walking is still not clear, but it is believed that the repetitive walking pattern helps the brain and spinal cord work together to re-route signals that were interrupted by injury or illness. Currently, this type of therapy is done with the aid of two or more physical therapists that manually move the patient’s legs in a walking pattern. However, the labor-intensive, strenuous nature and variability of the manual method can limit the frequency and duration of the therapy. With robot-assisted walking therapy, the robotic device does most of the heavy work, the pattern and pace are consistent throughout the session, and the exercise can be sustained over longer periods of time.

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…

Comprehensive Hospital CP Programs

I did a down and dirty study today of Web sites of some of the Best Children's Hospitals (per U.S. News) in the United States. I was looking particularly for the presence of in-house comprehensive cerebral palsy programs. What I found was that fifteen (15) of the twenty-five (25) top-ranked centers for "children with serious neurological problems" have such programs. 

Couple of observations: First, it could be that more than 15 of the top centers have CP programs but that not all of 'em expressly promote theirs. Second, I found it hard at first glance to discern which centers are the more seriously invested with regard to treating, researching and focusing (just) on CP.

Before I do any following up on those things, though...

I want to go in a different direction next and explore how intensive therapy is viewed within each of the above mentioned 15 programs. I know for a fact it's on the radar at Nationwide Children’s Hospital (ranked tenth in neurology and neurosurgery) in Columbus. As for the other fourteen (14) --

I don’t have much of a clue.

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.

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.