This blog has been brewing for a while.
It was motivated initially as a discussion on the treatment of spasticity in cerebral palsy. SuperLily, in the first instance, is a blog to provide parents with a parent-sided perspective about raising a child with CP.
It was also driven by a desire to talk about what “spasticity” means, and why it is abhorrent that people in this day and age still use the word “spastic” in slang as a derogatory description of someone ungainly, unintelligent or clumsy.
Blogging mojo – lost and found
I started working again full time four months ago, and I found it sapped my mental bandwidth to the extent that I lost my blogging mojo for a while. But then something happened that woke up the sleeping mama dragon.
At work, high in the sky in a glistening office tower, someone (who knows my daughter has CP) used the word “spastics” to my face. Someone who considers themselves to have high intelligence was describing to me how they felt sorry for incompetent colleagues in the way you had felt sorry for “the spastics” in the 5th and 6th team at school.
High intelligence perhaps, but zero emotional intelligence, and completely oblivious (like so many are) to how offensive and unacceptable this language is. But I am getting ahead of myself…
Spasticity
… a condition in which there is an abnormal increase in muscle tone or stiffness of muscle, which might interfere with movement, speech, or be associated with discomfort or pain[1]
…is velocity-dependent. [It] results from a loss of the dampening input from specific nerve cells in the brain across the pyramidal tract connections to nerve cells in the spinal cord, and hence to certain muscles[2].”
Spasticity stems from the word “spasm”, as in muscle spasm.
Spastic cerebral palsy is the most common form of CP. What it looks like, or how it manifests, is in muscles that are very stiff and that may look stiff and jerky when they move.
The thing about spasticity though is that it is not just a muscle problem, it is also a brain problem.
As I understand it, in cerebral palsy, spasticity results from damage to the motor cortex in the brain and the pyramidal tracts, which are the pathways connecting the motor cortex to the nerves of the spinal cord.
The motor cortex is responsible for relaying signals to other parts of the brain to control movement, and in the context of CP is important because it regulates voluntary movement. When this region of the brain is damaged, it can make it harder to send the signals that control voluntary movement and make it less fluid[3].
The specific signal that is impaired is one that inhibits, or dampens, the muscle stretch reflex. When this dampening action no longer happens, it results in “hyperexcitable” stretch reflexes which in turn lead to increased muscle tone[4].
To illustrate, when you try to voluntarily move a muscle, there is no dampening impact on the muscle’s reflexes and as the movement happens, it increases the tone in that muscle, making it more difficult to stretch (using the rubber band analogy), and therefore making it hard to execute the movement[5].
In Lily’s case (to the untrained eye) we didn’t really observe the spasticity when she was a baby, but as she’s gotten older it has become increasingly evident, and frustrates her more and more too.
As an example, Lily struggles to bend her knees to do a movement – could be crawling up stairs on her knees, could be transitioning from a seated position on the floor to kneeling. Could be climbing over something on the floor. As she goes to do the movement, the spasticity increases the tone in her legs so that they go out stiff and straight and she can’t bend her knees to complete the movement.
Reducing tone
Like any parent my main priority is that my child’s life is and will be the best it can be. But when your child arrives in the world under the circumstances ours did, you tend to meet any new development, diagnosis or even treatment with a degree of terror, or even suspicion. I don’t know why. Maybe it’s lingering post traumatic stress. I think maybe it’s the sickening weight of another decision to be made, another scary thing that you as a parent have to confront.
So when it was suggested we should consider baclofen or botox for Lily, I immediately went into defensive mode. No ways was anyone doing anything that might hurt Lily, that might be unnecessary, that might according to the literature (based on my layman’s research) have long term harmful effects. I was very worried that somehow it would make her go from being very “tight” to very “loose”. The way she has learnt to move or sit is all based on the tone she has. So if we suddenly removed all that, would she have to relearn it all? Would she find it all very disorientating and upsetting?
However, as I am beginning to learn, reducing tone is one of the main early stage treatment options for children with spastic CP. It is done partly to improve functionality, to help to strengthen muscles and more easily train motor control. But it is also done preventively to reduce the negative effects of high tone that can manifest over time, such as muscle contractures.
Our experience of oral baclofen
Our paediatric neurologist in South Africa (over Zoom) convinced me that a very low dose of a medication called baclofen would just help to “take the edge off” Lily’s tone. It would possibly help her to manipulate her limbs more purposefully and therefore make life easier for her, improve her ability to strengthen her muscles and build motor activity.
Baclofen, taken orally in Lily’s case (it can also be delivered via an intrathecal pump), is a muscle relaxer and antispasmodic agent. It acts on the spinal cord nerves, helping to dampen those hyperactive reflexes and therefore reducing the tone.
There are other options for treating high tone, such as Botox (yes, the same stuff used by the beauty industry to remove wrinkles), and for the right candidates, “selective dorsal rhizotomy” surgery. But as we have not yet had any experience of these, I won’t go into them here.
Lily has been taking the baclofen for about 2 months and I think it is having a positive impact. She is “less tight”. With the additional impact of physiotherapy, she can more easily bend her knees. She more easily pulls her legs up herself (she struggled to do that before). She sits more comfortably in a cross-legged position.
Lily’s physio did a baseline GMFM before she started taking it and it will be interesting to see what the next assessment shows in terms of impact.
Spastic, Part 2
Spasticity, therefore, is a very real thing. It impacts every movement my child contemplates asleep and awake. It impacts how we as her parents care for her, asleep and awake. It impacts how she functions and how she operates and how she accesses the world around her.
It has nothing to do with being unintelligent or clumsy.
For more on that topic, please read on for Part 2!
[1] https://www.ninds.nih.gov/Disorders/All-Disorders/Spasticity-Information-Page
[2] Collison, Lily (2020). Spastic Diplegia, Bilateral Cerebral Palsy. Gillette Children’s Healthcare Press. P43.
[3] https://my.clevelandclinic.org/health/treatments/8997-intrathecal-baclofen-pump
[4] DISCLAIMER: I am not a medical expert, nor do I pretend to have all the answers. I have done a lot of research to try and ensure the accuracy of the information I provide here, but ultimately SuperLily is a blog and you should not treat this site as an authority on any matter. Please consult registered professionals for medical or therapeutic advice.
[5] https://www.cerebralpalsyguide.com/cerebral-palsy/types/spastic/
