Posts Tagged ‘cerebral palsy’

Things done and undone

July 29, 2015

to do list (800x450)

Special needs parents always carry a burden–the things left undone. There are always more therapies, therapists, exercises, specialists, drugs, vitamins and research that we could take on. Early on, I realized that the best thing I could do for myself and my child was to say “no.” We both have very little patience–if something doesn’t work quickly and easily, we abandon it.

We’ve neglected exercises, canceled appointments with therapists, walked away from whole categories of specialists and thrown away medications when the benefits failed to outweigh the time, effort and side effects. I don’t feel regret over any of these things–my biggest priority is that Chloe have a happy life, and she can’t do that when she’s swept away be a stream of appointments and medication.

But there is always the list. The list of things I wish I did, or wish I did better. As a mother, as an employee, as a citizen, as a person. The list feels especially heavy today, so I’m dumping it here, in no particular order:

Things I haven’t done:

1. Brushed Chloe’s teeth today

2. Written enough thank you notes and birthday cards

3. Renewed the registration on my car

4. Figured out the best way for Chloe to use her expensive iPad/bluetooth switch combination

5. Written (until now!)

6. Managed to work from home today, as I nursed Chloe through a stomach virus

7. Had one of my photos go viral on Instagram

8. Found a way to make sure Chloe does not spend the last two weeks of summer parked in front of the TV.

9. Organized more play date with Chloe’s friends (and she has quite a few, of all ages, who probably wish they had gotten to see her more this summer.)

10. Exercised regularly

11. Cleaned the oven

12.Gotten all that paperwork from the doctor that I promised I would get about 2 months ago.

But to balance things out, here are some things I have done:

1. I wrote a blog post today

2. I managed to find a job I love, that has enough flexibility that I can stay home with a sick kid all day at the last minute if I need to.

3. Done (roughly) an hour of therapy a day with Chloe, and watched her improve her ability to control her head, hands and voice, presumably because of this therapy

4. Came up with a recipe for homemade tube feeding food, and tweaked it according to Chloe’s needs.

5. Organized a yearly tour of local breweries, which is pretty much the only big social event of my life.

6. Found an amazing guy

7. Introduced Chloe to her new favorite TV shows: Doctor Who, Buffy the Vampire and Futurama (the guy gets credit for that one)

8. Found a way that Chloe can say “yes” and “no” and continued to improve upon it.

9. Painted the living room and hallway in my house and didn’t leave a whole lot of the trim unpainted.

10. Laughed, a lot

11. Listened to music

12. Thought, at least once a week, well at the very least, twice a month “I have a good life.”

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.

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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