One step back and two steps forward

Every so often, things do not go how you expect.  Like when I deliver bad news, and it is awesome.

Yep, you got that right, awesome.

There was the time I told a mom that I thought her child needed a wheelchair.  When I said it, she paused, and there was an intake of breath.  She listened to the reasoning and rationale.  She listened when we reiterated that is was her decision, not ours.  She listened to the pros and cons.  She listened to the process.  She listened to me when I explained how it would help her child and her family.  She listened when I explained how I could help her.  And then she told me to go ahead and do it.  Awesome.

This is one of the crappy, but often unspoken parts of my job.   In the schools, my job is to make sure that kids can access their education in a safe and efficient manner.  Physical therapy in the schools is not designed to meet all the therapeutic needs of a student, but rather just those that impact access to one's education.  It involves a lot of accommodating and problem solving.  It is why I don't work with kids older than 3rd grade a whole lot.  At that point, most children with developmental disabilities are relatively stable.  PT stays on in a consult mode to help classroom and building staff by training them with lifting and positioning, on using equipment appropriately, and with wheelchairs and braces.

I have seen a lot of kids with cerebral palsy (CP) in my career.  CP is a catch-all term to describe a condition that results when there is brain injury prior to, during, or shortly after birth.  Often, children who have strokes before the age of 2 are usually labeled with CP, although I do think they present much differently.  CP is quite common in children born prematurely, with the risk increasing the earlier a child was born.  CP ranges in severity, and its effects are varied, depending on the area of the brain injured and the size of the insult.  As such, people with CP can have normal cognitition, or be severely intellectually disabled (which used to be what was called mental retardation).  People with CP always have a motor impairment, but is can be a minor tightening in the calf muscle, impairment of one arm, impairment of one whole side of the body, impairment of just the legs or the whole body can be involved.  Most people with CP have spastic, tight muscles (but there are different types that can also cause loose floppy muscles, random uncontrollable movements, or difficulty with coordination).

In kids with the spastic type of CP, the pre-pubescent growth spurt is a nasty thing.  We all know that kids seem to shoot up overnight once they hit 10, 11, 12 years old.  They come to school seemingly 2 inches taller than the day before.  Generally, during these growth spurts, the bones grow quicker than the muscles.  In people with spastic CP, the bone growth causes the muscles to be stretched, which increases the spasticity and tightness, which makes the already tight muscles tighter.  This makes joint deformities and limited range of motion even worse.  So, if before the growth spurt, a kid had tight hamstrings, he would have difficulty straightening his knee all the way.    After the growth spurt, the knee would straighten less and be bent even more.

Now picture walking this way, on your toes, with your knees bent.  It takes a lot of energy.  Now, go up on your toes a little more and bend your knees a little bit further.  Hold it that way.  Now walk.  Pretty tiring, right?  Hard to hold your balance, right?  Walking for people with spastic CP is very energy costly.  They can fall a lot.  Also, the chronic stresses placed on joints that are in poor alignment causes early degeneration.  Arthritis is common, often by the teen years.  Adults with CP can have a lot of pain because of this degeneration.

Often, we hear reports that children are falling asleep in school because they are so wiped out from moving around.  Anxiety and fear often begin to limit the child as he or she is afraid of being in crowded areas where they might fall.  Kids give up physical activities that they used to love.  These kids are often in pain.  Use of a wheelchair can help the child preserve energy while at school, thereby allowing the child to use energy to attend to learning, rather than moving from point A to B.  The wheelchair can also diminish anxiety in the school, home and community, which can improve the quality of life overall.  Pain can be diminished as well.

I know that some people with CP who are ambulatory do not feel that a wheelchair is a good solution.  I have gone many rounds with many families about this.  Their children have worked so hard to walk that they do not want to take that independence away from them.  I feel that a wheelchair, especially when a person still has the ability to walk, actually gives more independence, but it is from a different perspective.  There is no perfect, one size fits all solution.

I know when I have this talk with a family, it is difficult for them to hear.  It does not seem like many of my families are prepared for the changes that puberty bring (other than the obvious) for their children with CP.  I don't feel that the physicians prepare the families for the decline in function that accompanies puberty for many individuals with spastic CP.  The mom that I am thinking of  handled the news with such dignity and grace.  She had seen the decline in her child.  She knew that her child was having problems.  No one ever explained to her why, or how it was impacting her child (for example, she knew anxiety in crowds was becoming problematic and that her child was avoiding going out, but she didn't realize it was due to fatigue and unsteadiness while walking).  At that time, I don't think she knew I was going to suggest a wheelchair.  I'm sure that she cried over the recommendation.  I'm sure her child cried too (which breaks my heart, because I never want to make anyone cry) .  It is a loss for them.  But with the child's increased mobility, energy and confidence, it will be more of a gain.


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