Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Wednesday, September 5, 2012

Back to School: Part 2A School-Based Physical Therapy

    
     Many children who have severe special needs and attend public schools will receive a "related service" called Physical Therapy through their IEP.  In many cases, these children are neurologically affected because of a brain insult, i.e. stroke, cerebral palsy, traumatic brain injury, muscular dystrophy, genetic mutations, metabolic disorders, etc.  These diagnoses result in movement disorders as a result of spasticity, dystonia, contractures of limbs, scoliosis, hip subluxations and a host of issues which impact a student's ability to progress educationally.
     From my experience as a high school principal for over 30 years, physical therapists and their assistants work with students to overcome these deficits to some degree.  Most of their efforts result in more severe, sustained damage rather than good.  Most IEP's call for 30 minutes of PT about 3 times a week; the equivalent of receiving no service at all.
       A bit of history is required.  Physical therapy is based on a model which has not changed over the past 50 plus years.  This practice is often in direct contradiction to research and science based evidenciary approaches.  I would assert that most school based physical therapists know little about the human body and movement, but they would be insulted.  I do know that the approach in school based special education program does not work, is not scientifically based and is harmful in many cases.
       Adapted physical education is a component of regular physical education...the curse of most students.  It's actually activity which could be directed by any paraprofessional.  Also PT may be beneficial to those students whose muscles may need some strengthening but possess normal tone.    That's where the value stops.
       School based PT's are infamous for intruding into territory where bodies or limbs or spines are spastic, contorted, dystonic, deformed, non-mobile, etc.  Here is the area which abounds with failure and damage because their bag of tricks is rooted in orthopedic modeling.  The bag of tricks includes stretching limbs, rolling spastic bodies on therapy balls and bolsters, standers, gait trainers, etc.  They also frequently recommend AFO's,  DAFO 's, and consults for medicines and surgeries.  So let me take a   look at several tricks which cause damage: stretching spastic muscles, standers, and orthotics.
       STRETCHING:  Well, it's obvious that a brain insult results in a collapse in the fascia.  The musculo-skeletal systems are there, but relatively useless without the support of a network of connective tissue called the myofascia.  Without an intact, seamless, strong fascia where the layers glide seamlessly, the other systems don't work.  An inability to hold one's head upright is not a function of a lack of cervical vertebrae, nor cervical muscles...it a collapsed fascial system.  This is a symplistic explanation of a newer view of a dynamic interaction of systems.

      So, PT's believe that if you stretch spastic muscles or contracted limbs, the muscles will lengthen.  When the muscles lengthen spasticity will decrease and movement is more probable or efficient.  The reality is that the opposite happens .. the more stretching, the more intensity of stretching, the greater the intensity of the spasticity.  This occurs in the context of collapsed fascia.  Despite the research, PT's stretch the shit out of kids' muscles.  It never works but you keep doing the same thing.
       Research references on stretching muscles and spasticity:

video


       STANDERS:  Here is another very expensive, relatively meaningless piece of PT equipment which after a few months of use ends up sitting around.  There is minimal research concerning the effectiveness of standers.  A PT will say that it allows a disabled kid to appear more "normal" in that he or she can be at eye level with kids and adults.  OK?  The only research that I was able to access was that over a 6 week period of time, standers did temporarily lengthen hamstring muscles ...note for only six weeks.  Anyone know of positive research?
Place this child in a stander with the effects of
gravity and you will amplify the existing curvature
      Of course the negatives are big negatives.  Strap a kid in an upright stander and imagine the strain on the system?  Here is a scenario with my son, Adam, in a stander for one hour a day.  First you have a weak core of fascia which envelopes the trunk.  Oh, the fascia supports the muscles and the vertebral column.  So, a weak support system of fascia leads to uneven support of the spine.  Some muscles pull left, others right, some are weak, others strong....a tug and pull on the spine.  Add an upright stander and add the effect of gravity pulling the cores and the spine downward...the weakness of the fascia provides the ground for an unequal distribution of forces which allow the gravity to pull downward unequally on the spine.  The result is scoliosis.  Once the curve is initiated, the more time in the stander, the greater the curve.  Seems simple.  The cure for the resulting scoliosis is either orthopedic intervention by fusing vertebrae or inserting titanium rods which have snapped due to increasing spasticity. 
Piss poor operation to insert a titanium rod
to solve the problem of scoliosis
This is a high price to pay for eye-level positioning.   And, the surgery further weakens the fascia through scaring and adhesions.   Do no harm?

      Orthotics?  They take the intricate web of bone and assume it's similar to a hoof.  One simple joint at the heel or the ankle.. The purpose?  Dunno!  Can't correct a deformity, can't strengthen the myofascia, can't prevent spasticity or contracture ... do have some mild effects with children who are walkers.  Big money and they hurt!

  •    Braces and Orthoses in Cerebral Palsy (YouTube explanation of why they do not work in most cases)  


      For the past 50 years we have considered the same interventions based upon faulty assumptions of how the body works while there is skepticism towards newer approaches which have positive and non-intrusive effects on the body.  But they don't teach these in PT schools which are probably endowed by durable medical suppliers and keep making the same devices without peer-reviewed research as to their effectiveness.  I truly believe that the present system of school based physical therapy is minimally bogus and generally dangerous.
      I could share thoughts and experiences in more depth on orthopedic surgery for scoliosis and various subluxations, on spasticity meds and baclofen pumps, and I will on request in a later blog, but only if there is interest (please comment if you want me to explore interventions of orthopedics or physiatry). 
      The follow up post will focus on promising modalities which work more effectively than the old stretch and pull. There are a number of promising approaches based on scientific evidence that you won't see in school, unless, of course,  you throw a hissy fit as a parent.  Remind PT's "FIRST and Always Do No Harm!"

15 comments:

  1. Makes my hair stand on end!

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  2. Mine is still standing on end. After 4 years of stretching and standers in school...we have been working since 2003 to undo the damage (3-5 hours a day) and making progress and avoiding surgery and meds. I bleed for parents who simply trust "professionsls."

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  3. Dear Phil, I am so glad that you are blogging about this, IMHO, I think that you should write a book on this. This is the type of information that parents should be handed when their kid is diagnosed/has a life changing injury. I think this is a brilliant piece and can't wait to see your next instalment.

    These "professionals" don't like it one little jot, when you challenge them on their professional opinions. Maybe a how to stand up to these "professionals" for a future blog post?

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  4. Thanks for your ever kind words, Mel, but I am too old and lack sophisticated knowledge to write a serious book. I do know that in the late 90's when Adam had his near drowning we were at a loss as to possible therapy to relieve his pain. Doctors were of little help; physical therapists did what they thought was right because of their "old"training, even though they were young.
    We searched and searched until we found something which was helpful, ABR, and few other things. We had to teach school therapists the technique, some used it, the professionals rejected it because is was "dissonant" with their training. We still are undoing the damage and this blog is a simple attempt to help others avoid our mistakes. Mistakes are something you regret but can't do much about, so you try to share the word.
    The only way to challenge the "pros" is by giving then research. The research is there about what does not work; ABR, through Marc Driscoll, Leonid and others is demonstrating that there are ways that work and they are generating and presenting the data at international conferences. It will take time. Our best to you....and sweet JJ.

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    Replies
    1. ABr is absolutely Brilliant, and it actually works, since my hours have reduced and Oatie has grown some I can see the negative changes in his skelteal sytem. I am really lloing forward to getting "rolling again" as although it's slow and steady you can see and feel the progress under your hands.

      I know for a fact that he wouldn't have got bladder/bowel control if it wasn't for ABR those 6 months I rolled his PF (pelvic floor) I could feel the difference in him and ABR is truly Amazing! (Unfortunately I can't go back and correct my typos, Apple Vs Google arghgg)

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  5. I've thought heavily about the PT/OT my daughter receives. Push in/push out/group collaborative...it all seems like it doesn't do as much as they say it does. By the time they set up/get to the therapy room/calm everybody down, the 30 minutes are up!
    I have been thinking heavily about what to do about our situation. I can't say that she hasn't benefited AT ALL but I feel like we are missing something.
    You have spoken about ABR a lot. I haven't researched it in quite some time. Perhaps this is a route we should begin now?

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  6. Inactive muscles which do not resist PROM are not harmed by traditional PT. It's all about kid's needs. Adam will never be independent, nor walk, nor absolutely freely move, etc. Our goal is to make him comfortable in his body and to prevent degeneration, meds and the need for surgery ...ABR is successful here for us. It's also great for many CP kids. It requires parent training 4x a year in Montreal initially and parents commit to 3 hours of work on their children daily. It essentially allows one to resculpt a body and move to mobility and functionality. Most ABR kids have CP, early strokes, near-drowns and neurological related syndromes where movement disorders manifest. The best look at clients and the therapy is at www.abrcanada.com. They offer a free eval by uploading a video through the site. Another good option is the Anat Baniel Method and Feldenkrais Method. Best wishes....

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  7. The little boy in the video has ankles exactly like Daniel's. We went to a flexible AFO and the PT didn't like it. I insisted on it this year. During the summer he walked without shoes or afos while on the carpet. At my house there's tile, very unforgiving, so I use the flexible afos.

    Can you watch Daniel in a video and give me some feedback on his walking? I appreciate any advice. He has low tone, no spasticity.

    Thanks, Phil!

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  8. Of course, you can get me access to a video. I would be happy to view. I would share my thoughts, which are not a substitute for mom's intuition and heart.
    I am no expert or anything which approximates this level of understanding. I know based on ABR biomechanics and personal experience that AFO's will not stretch muscle, correct deformity, nor prevent future deformity of the ankles or feet. There are too many forces for AFO's to have much effect. And those stressors arise at a pelvic/hip area.
    However, if the purpose is support for the ankle and foot in a child that is taking steps or walking; support is fine, as long as the core of the body supports this activity.
    Please send the video and I'll give you an impression, but your intuition is more valuable

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    Replies
    1. Thanks, Phil! I'll tape him this weekend in the flexible afos and let you have a look. I've considered using high top shoes for support instead of afos, as well.

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  9. As a PT, this is very enlightening to read. I work with kids age 0-5 only, so I don't have experience with kids of Adam's age, beginning when he was injured and up until now. In 8 years of practice, I have only seen one child who had a near-drowning experience, and one other child with a different injury but who presented similarly.

    Please remember that all PTs are not created equal; some of us are very much interested in evidence-based research, alternative therapies, and everything parents have to say, since they know their children the best. I'm sorry you've had negative experiences. One of the most profound experiences during my internships (in 2004) was seeing an adult-hospital-based PT do craniosacral therapy on a 12 year old who had just come out of brain tumor removal surgery, and what an incredible calming and pain-relieving effect it had on him. PTs can be trained and bill for things like Feldenkrais, ABR, craniosacral, and any number of other "alternative" therapies, even in school settings. I completely agree that school-based PT is a poor substitute for "real" PT, and I actually think that equipment of all kinds is used too much. Until special ed is truly overhauled, I don't see big changes coming--just what we therapists can do in our own little worlds. Just keep swimming...Liz

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  10. Liz, thanks for the comments and it bodes well for the profession that some PT's think outside the box of the orthopedic model. If you don't know, you are certainly an exception to the traditional approach. I would guess that the medical model is predicated upon bones and muscles, the kind you see in the hanging skeleton or the wall chart. A failure to realize that glue which is unseen in the diagrams is the fascia...that which make the activity of the bones and muscles coordinated and capable of communication within the body. Kinesiologists are more familiar with these mechanisms ... I am hopeful that younger PT's as yourself keep look at that which works. Regards!

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  13. No physical therapy graduate. is able to practice without completing the National Physical Therapy examination. Thus you need to study in a school that may help you succeed in the licensure test.

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