Archive for the 'therapy' Category

Pascal’s therapy wager

November 3, 2010

Pascal’s wager refers to a theory put forth by Blaise Pascal, a seventeenth century french philosopher.  It suggests that you might as well believe in God, because belief won’t do you any harm, while non-belief could lead to damnation.  This was his solution to the uncertainty of religion, the fact that you cannot prove beyond a doubt that God exists.

Pascal’s wager has many flaws (for example–which God should you believe in?) and it seems like a kind of overly practical and academic approach to something as weighty as religious faith.  But I think this kind of wager is the way people tend to make decisions–you given up trying to be completely sure and just go with the answer that seems most likely to pay off.   As understandable as this is, it doesn’t seem like the right way to make decisions about things like healthcare, but unfortunately, there is often no other choice.

Take physical therapy for kids with CP.  Like God, it has lots of believers and its importance is touted all over the internet:  “Physical therapy is one of the most important aspects of cerebral palsy therapy” (from Origins of Cerebral Palsy) and “One of the mainstay therapies for cerebral palsy treatment is physical therapy” (from Cerebral Palsy Source).

Also like God, these statements are unproven.  Now I’m not talking about physical therapy in general, just when it comes to people with cerebral palsy.  In a 2008 review of studies of the effects of PT on CP, the researchers “found no strong evidence on the reviewed interventions.”  What they found was that most of the studies were flawed.  Only 4 of the 22 trials were considered “high quality,” and only one of these studied conventional, comprehensive physical therapy.  This physical therapy study concluded that “intensive physiotherapy produced a slightly greater effect than conventional physiotherapy but the factor more strongly associated with increased motor skill acquisition was the use of specific measurable goals.”  In other words, giving children clear goals was more effective than giving them more therapy.

The effectiveness of physical therapy should be easier to test than the existence of God, but it’s actually surprisingly difficult.  For one thing, CP manifests differently in every individual, and even two children with the same diagnosis (spastic quadriplegia, for example) can have two very different sets of skills and challenges.  Physical therapists also differ in quality and approach to treatment, so there is no such thing as a homogeneous group of kids getting the same therapy.

Also, there are no real control groups in studies of physical therapy, because pretty much every kid is getting therapy of some kind.  Many studies compare one kind of therapy to another kind, or regular amounts of therapy to intensive amounts of therapy.  In addition to this,  most kids who take part in these studies keep attending their regular therapy sessions, and often get extra interventions from their parents at home.  Even though physical therapy has not been proven to work for kids with CP, no one wants to give it up for the sake of a study.  That would mean being on the wrong side of the wager.

But are the two sides so clear-cut?  Pascal’s wager is based on the idea that belief is, at worst, benign.  But is physical therapy benign?  In a 1988 study, children who received more therapy made less physical and mental progress and were less likely to walk.  Of course, this is just one study, and it’s very old.  But again, the lack of information is part of the problem.

PT has other, more obvious drawbacks.  For example, children who receive PT at school are pulled from their regular classes and end up missing out on academics, and at home, kids with CP have “therapy moms” who shuttle equipment-loaded SUVs from clinic to clinic, stuffing hours of therapy into their weeks.

People are beginning to question the overly structured schedules of kids these days, and I would say it’s an even bigger problem for kids with disabilities.  After all, kids who play soccer or attend dance classes at least get a chance to interact with their peers and have fun, while kids in therapy are usually isolated inside a room with a therapist, and while this might sometimes be tolerable, in my experience, it is rarely fun.

These sacrifices might be worth it if physical therapy helped kids with cerebral palsy, but according to the literature, this is unclear.  It’s not exactly a surprise to me that PT may not work for kids with CP; after all, I’ve watched it not working for my daughter ever since she was 3 months old.  Back then, she could hold her head up for ten seconds.  Since then, every therapist has promised to improve on that.  “Oh, we’ll definitely work on head control,” each one says, as if she is the first to address this problem.   Six years and seven therapists later, how long can Chloe hold up her head?  Ten seconds.

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Crossing a Line

July 14, 2010

Recently, the inventor of what I call “our wacky therapy” published an article in the Journal of Bodywork and Movement Therapy, an important step toward scientific legitimacy, acceptance by mainstream medicine, and, most importantly, insurance payments. I’ve researched many therapies in an effort to find the best ones for Chloe, and I’ve seen many which present only anecdotal evidence, or cite tiny, badly organized studies to prove themselves, so the fact that ABR is being so thorough and careful in its approach makes me very happy. It also makes me think about the arbitrary line between “mainstream” and “alternative” approaches to health and medical treatment.

In medicine today, there are several issues that seem to divide people into these two camps. Vaccinations come to mind immediately. People who are against vaccinating children point out, correctly, that big drug companies get away with, (literally in some instances) murder and that they are not trustworthy. They also claim, preposterously, that vaccinations have been “proven” to cause autism and that this is a valid reason to expose millions of children to deadly diseases. The other side points out, correctly, that without vaccinations, many children would die and that our quality of life would plummet. They also claim, absurdly, that we should all shut up and trust doctors and drug companies, in a country that falls at the bottom of the list when it comes to quality of healthcare.

This either/or approach drives me nuts, because I believe that there are many valid treatments and medical approaches that are stuck on the “alternative” side of fence, destined to be scoffed at by doctors and championed by freaks. And when your child has an “uncurable” condition, like CP or autism, it’s frustrating to get handed the same old useless prescriptions by a doctor who warns you against trying anything nutty. It’s also frustrating that the “nutty” approaches tend to take short cuts to legitimacy, such as Dr. Wakefield’s severely flawed study of vaccinations and autism.

Which is why I’m happy that my bet, four years ago, that ABR was the most promising “nutty” therapy for CP seems to be paying off. Not only is Chloe’s range of motion and motor function steadily improving, but the therapy is improving as well. They are gathering extensive data of every child involved, and making their case in legitimate forums. ABR claims to present a paradigm shift in the field of biomechanics, and maybe someday we’ll see that shift having an impact.

ABR

June 9, 2010

Full disclosure: I get a discount on Chloe’s therapy for including links to ABR therapy sites and blogs by fellow ABR parents on this blog. I am not, however, required or encouraged to rave about the therapy, or say anything about it that I don’t actually believe.

So what is ABR, you may ask. Well, you should probably just go to the website; it explains it better than I could. When I talk to doctors, therapists, or other parents, I describe ABR as “a kind of massage.” And they all think that’s cool, if maybe a little wacky. I don’t say “it flies in the face of everything you think about brain injuries, cerebral palsy, spasticity and biomechanics” because, well, people don’t really like to hear that kind of thing.

Recently, Chloe and I saw a new doctor. When I mentioned ABR, she looked down at her lap and said “Oh.”

“You’ve heard of it?” I asked.

“Yes,” she said, carefully. “I think it couldn’t hurt, and it has probably helped her sensory issues.”

Sensory issues, whatever. ABR has little to do with sensory issues. Yes, it probably does help them, but that would just be a side effect. But the point is that yes, it doesn’t hurt. Unlike botox shots, baclofen pumps, surgery, and even physical therapy, ABR has few negative side effects. The only one is that it’s time consuming, and, for a parent like me with a wiggly kid, frustrating.

I can’t say for certain that ABR works. The ABR people are currently gathering information for a big study that will hopefully show benefits. But right now, anything I say falls under the category of “anecdotal evidence,” which means it could be a coincidental, or even my imagination. But I’ll tell you this. Before ABR, Chloe could not vocalize (except to cry) or reach for toys. She could not lift her arms past the level of her shoulders, and she couldn’t pull her head forward at all. Now she can do all these things. Small gains for years of intensive therapy, but they are gains. They are permanent, and she didn’t need drugs or surgery to achieve them. For the two years before we started ABR, she made no progress at all. None.

So that’s my take on ABR. When you have a severely disabled kid, the medical industry offers little or no hope. Most treatments come with pain and risks, and might not work at all. So I decided to look outside the mainstream, find something that could be the next big thing, the paradigm shift necessary to spawn a breakthrough. And I believe ABR is it. I could be wrong, but I choose to believe. ABR gives me hope.

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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