The hard truth about the lack of progress stretching kids with disabilities

This is not medical advice.

This one is difficult to admit, however I think the truth is more important. Ultimately, we want to help people.

I started seeing kids with cerebral palsy in the school systems as part of a rehab contract in the 90’s. I was in my 20’s, and only a few years out of school.

I was determined that I was going to “make a difference.” Some therapy school programs do not spend much time on pediatrics. Noticing some physical deficits to “correct” were obvious. “The kid I’m seeing does not have full joint range of motion in one or more of their joints.” Seems simple. Let’s just spend lots of time stretching.

Because I was so determined, I had these poor kids sit for 3- 30 minute sessions per week for this stretching. Of course we had some games and books, and ways to occupy their time, however they still had to sit still for most of the stretching.

Without much guidance, I knew that their muscles would need to be relaxed, otherwise stretching would not be successful. That’s true in most diagnoses or situations.

A relaxed muscle tone in a child with spasticity and/or cerebral palsy, is a relative term. This is an overly simplified explanation of what is going on; at one point in development there was damage to brain tissue, sometimes a bleed, sometimes a lack of oxygen. That injury led to a loss of some motor control.

The issues are systemic, and neurological, but as an example, let’s look at the elbow joint. I am able to straighten my elbow, because my body automatically relaxes the bicep muscle. I won’t be able to straighten the elbow, unless the bicep relaxes.

In certain cases, such as cerebral palsy, that muscle is unable to relax. Over time, a contracture of the joint also sets in. So that when I try to “stretch” the elbow of that kid, it is unlikely to move, be very difficult, or not progress in range of motion over time.

That is what I witnessed over the years. Buzz words start to creep into the industry, like “functional.” This means that at a certain point we abandon the stretching. Despite the severe joint contractures, can I help this kid walk, or open doors, instead of spending all this time stretching, which has not progressed.

I am not saying that stretching should be abandoned. Sometimes we need more shoulder motion to get dressed. Sometimes if we don’t stretch, the contractures will get worse.

Medical Botox can help relax the muscle for a few months, and that is the time to really focus on increasing range of motion.

When I look back at all the lack of real progress, I wonder, what is the big picture? What is the root cause, to fix the problem at the source? I don’t think we have that answer. The original “accident” has caused harm that we are unable to reverse.

Elon Musk wants to come out with a neural link between a brain and a computer. He has mentioned medical applications. Is that a good idea? Could a computer link relax certain muscle signals? I don’t know. I’m not in the child’s shoes. I think most of us are wary of connecting the internet to our brain. Someone in a wheelchair may be more accepting of the possibilities of technology.

Stretching a joint is a band aide approach. We are treating symptoms, but not fixing the overall problem. Sometimes the industry will prescribe Baclofen to decrease spasticity.

There are side effects to Baclofen. This medication is a central nervous system depressant. Maybe you are a child with cerebral palsy learning to walk. Will the medication make that more difficult? I am not suggesting this not be taken. That is a decision for families to make with their doctor. Sometimes the child needs to decrease spasticity to function. Sometimes that decrease could make some functions worse.

I have met kids who use some of that spasticity to function, like holding a cup.

Overall, every kid is an individual, and each case and set of circumstances are different. None of these are blanket statements for all patients.

I will tell you the one overall consistent factor that leads to success in these kids. It’s very strong parents who do not wear their disappointment “on their sleeve” about the overall situation. Parent emotion is the biggest factor in the kids overall frustration towards their own situation. I have met incredibly strong parents who I think are better at controlling their emotions about the situation, than most of the general public. Most of us, when we see a kid in a wheelchair or walker, we feel sorry for them, and want to “do something” or say something. That often times just comes off as patronizing. It sounds cliched, but I’m guessing they just want to be spoken to like everyone else.

Later this week, I will publish an article about “toe walking,” and misconceptions about what may be causing that. Probably an inflammatory article in between :)