The Mysteries of Cerebral Palsy

April 29, 2010

I got a text from Chloe’s aide today:  “B says it’s the foam.”  Translation, Chloe’s school PT thinks that the foam inside her ankle-foot orthotics is causing the red marks on her feet.  Thing is, the foam was put there two days ago by the orthotist, in an attempt to stop the red marks.  This is not exactly a surprise.  When it comes to the details of brain injuries, no one seems to know what they’re doing.  When Chloe started taking anti-seizure medication last year and started having twitches in her hand, one neurologist told us to decrease her dosage, while another one told us to increase it.  Everything about cerebral palsy, from the head to the toes (quite literally) seems to fall into the category of medical mystery.

Sometimes I wonder if this is because people are looking at things the wrong way.  The best therapy we’ve tried, ABR, is based on theories that completely contradict the traditional views about cerebral palsy and biomechanics.  Sometimes I wonder if everyone else–the neurologists, the physical therapists, the orthopedists–are operating under false assumptions, practicing their trade in the medical equivalent of Ptolemy’s universe, where the sun revolves around the earth, and no amount of studies and theorizing can do any good.  Does that mean that ABR is Copernicus?  I hope so, but, without any solid scientific data on this therapy, there’s no way to be sure.

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