The Greek philosopher Heraclitus is credited with saying, There is nothing permanent
except change. That could be the summation for cerebral palsy (CP): Though
it’s not progressive, its presentation changes with time. Children with CP grow,
of course. But even when they reach adulthood, their symptoms can change.
MIDDLE-AGED MAN: SHUTTERSTOCK.COM/STOCKFOUR
When the Primary Diagnosis Isn’t Everything
Angie Kiger, M.Ed., CTRS, ATP/SMS, is the Clinical Strategy & Education
Manager for Sunrise Medical. And she brings a personal perspective to this
discussion on changing presentations.
“I am a low-tone baby, all grown up,” Kiger explained. Diagnosed as an infant,
she worked with a physical therapist while learning to walk. A few years ago,
Kiger resumed PT visits.
“I see her every so often, just to check up on things,” Kiger said of her physical
therapist. When she’s noticed a new pain, some body part that hasn’t hurt before,
Kiger said, “I’ve asked her, ‘Why is this different?’ And she says, ‘It’s the natural
aging process. Your body has adapted with compensatory strategies, but your
body’s not designed to do that. You’re now breaking down and having pain
because you learned a completely incorrect way. So yes, it’s your low tone, but it’s
the aging process, too.’”
That was a revelation to Kiger. “As people focus on seating and mobility, no
matter what age group, pediatrics through adulthood, our nature is to focus
on ‘What’s your primary diagnosis?’” she said. “As seating specialists, we can
become hyper-focused on the diagnosis that’s causing [the client] to be in that
chair. Looking at the natural aging process may sometimes be forgotten. I think
some basic medical diagnosis may get overlooked for people who have an underlying
or primary condition such as CP.”
Alex Chesney, OTR, ATP/SMS, Clinical Sales Manager-Midwest South for Quantum Rehab, said that once the primary diagnosis for CP is
made, it’s sometimes left out of subsequent conversations because
CP isn’t a progressive condition.
“That’s the biggest gap to me in our medical system,” Chesney
said. “We’re really good at reactive intervention or if something
new just happened. [After that] it’s, ‘Okay, bye! Go live your life.’”
Chesney added that it can then fall to the client or caregivers
to ask questions about functional changes they’ve noticed. “A lot
of follow-up is based on a client or their family’s persistence in
maintaining that follow-up schedule,” she noted. “It’s hard to tell:
Is it aging, or is it how a diagnosis presents and changes?”
How Aging Impacts CP in Childhood
As Kiger pointed out, growing can be complicated for kids with
CP. For example, they grow taller, but not always wider.
“Their bodies are oftentimes burning more calories because
of the high tone,” Kiger noted. “It’s constant movement. Also,
some might not be getting all their nutrition actually hitting their
stomachs if they’re eating by mouth. Eating by mouth can be
strongly motivated by the parents’ desire. People associate food
with pleasure, so putting a G-tube in and stopping somebody
from eating by mouth for safety reasons can be heartbreaking for
parents. Sometimes, a G-tube is one of the last things they do.
“Then they get a G-tube and [the child] plumps up. They’re
getting their full nutrition as opposed to [food] being drooled out
or going down into their lungs.”
Chesney said medications to treat a child’s spasticity or muscle
tone can be effective, but can impact seating and mobility. “There
are injections, like Botox or Phenol. But that is a very highly
committed process because it only works about three months
and then you have to go back [for more injections]. Or there is
something more invasive, like a Baclofen pump that provides that
medication directly to your spinal canal. I’ve had this experience
with kiddos when they’re very young: You try wheelchair
mobility with them, but you don’t quite have that spasticity and
tone component figured out. So you try mobility devices and you
decide, ‘This is off the table.’
“But if there are changes in that spasticity management over
time, somebody has to bring that conversation up again. When
there are changes in spasticity and tone, people may not connect
that with ‘Oh, we have to re-evaluate mobility.’ How has spasticity
changed over time? We should revisit your mobility now
that you’ve noticed some changes with that.”
Complicating the situation further: Chesney noted that some
tone can be helpful: “There’s a fine line. Some people utilize
that spasticity functionally. Those with CP might use their tone pattern to help them stand up or walk. It’s not going to be a traditional
gait pattern, but they might use that tightness and that
tone to have a form of ambulation. That’s when we have to look
at it and say, cost/benefit wise, how is this going to impact you
over time? How is this impacting your hips and knee joints? Do
we need to look at managing some of that spasticity, but we don’t
want to take all of it away?”
How Aging Impacts CP in Adolescence
Once kids hit puberty, physical, emotional and social changes
begin, Kiger noted. “You start to see weight gain for a number of
reasons. When kids are little, they are naturally cute, and people
take them out of their chairs and play with them. It’s much easier
to transfer them, so they’re in their stander, they’re in their gait
trainer. They’re possibly burning more calories.
“As they hit middle school, the demands of classes can be
higher. A kid might say, ‘I have six periods, I don’t have time to
be in a stander.’ Especially if they’re eating by mouth, they’re
teenagers, and they want to go where their friends want to go.
There’s junk [food] available. Just because a kiddo has CP doesn’t
mean they’re going to want to watch their weight.”
Parents and therapists must now work with a teen who has
stronger opinions. “Compliance changes,” Kiger said. “When a
child is little, you can kind of force them to go to therapy. For
pre-teens and teens, it’s natural to rebel against your family. So
if you’re being told you have to go to PT or this PT is telling you
you’ve got to do your home exercises: ‘Yeah, whatever.’ Parents
are going to do what all parents do: Choose their battles.”
How Aging Impacts CP in Middle Age
Kiger added that changes don’t stop once the client reaches
adulthood. “As someone who worked primarily in pediatrics
before joining Sunrise, we used to preach ‘developmental
milestones,’” she said. “Why do people stop focusing on
developmental milestones once people are out of adolescence?
What are the developmental milestones as an adult that you go
through?”
“I am an occupational therapist so I worked in in-patient
neurological rehab primarily with adults,” Chesney said. “I
worked with clients with spinal cord injuries, some adults with
CP or neurodegenerative diseases. No matter what your diagnosis
is, the phenomenon of tone and spasticity comes from that
neurological impact. What’s so hard is it’s so unique to each
person. One form of managing spasticity isn’t necessarily going
to work for everybody.”
Chesney said she views spasticity as an indication to look
closer: “Spasticity is dynamic, it is velocity dependent. It’s the
body’s way of telling you something’s wrong. When we see somebody
that we’ve been working with, and their spasticity today is
just really terrible — it’s hard to move them and they’re tighter
than they usually are — there’s a lot of questions.
“Did you not sleep well, did you miss taking your medication?
Have you had a bowel movement? When somebody is constipated,
or maybe their bladder is full, their body is going to have
higher spasticity and tone. It’s like your body’s way of saying,
‘I have to focus on something that’s not right. I can’t focus on
relaxing these muscles.’ If somebody is in pain, you’re going to see their spasticity is worse.”
Chesney believes in tracking spasticity throughout the client’s
life. “Do you feel that it’s stayed pretty stable? Do you feel like it’s
decreased or increased recently? If it’s still significantly impacting
daily living, if they’re having trouble performing activities or
they’re in a lot of pain — that’s when you want to bring up ‘Have
you checked in with your physician who manages your spasticity?’
Sometimes it’s been awhile since anyone’s revisited that.
They just accept that it’s gotten worse.”
And her message for a client who’s thinking that: “I always
remind them there should be ways that we can manage this. The
goal is always to manage someone functionally and make sure
they’re not in pain. So it does have to be revisited. You don’t just
start one treatment and stay on it forever.”
“When people get older, their skin gets thinner,” Kiger said.
“So as somebody ages, they may become more susceptible to skin
breakdown. That can happen in somebody with dementia who’s
still ambulatory and living in a long-term care facility. If they’re
hitting these different decades, you need to add all that into your
thinking when you do the eval.
“You’ve got to start thinking about early-onset dementia.
Just because somebody has CP doesn’t mean they can’t develop
dementia, too. If a client is non-verbal and CP impacts all four
extremities, maybe dementia is playing a part in why he used
to be super compliant about doing pressure reliefs, yet now is
suddenly not as compliant. Suddenly, they’re non compliant
about doing weight shifts. Could it be dementia?”
The lengthy pandemic that forced people to stay home might
also have impacted people with CP, Chesney said. “I feel for
parents and caregivers: They’re juggling online school and
children and working from home along with care needs. I just
feel like a lot of visits became telehealth visits, which is fine and
certainly has a place. But I think a lot of times, people are just
trying to rush through: ‘Everything’s going fine.’ Nobody wanted
to bring something up that was going to cause them to need to go
in for [an in-person] visit.
“Maybe people haven’t been getting out as much, or they’ve
been spending more time in bed. For sure, people need to check
back in.”
Still, Chesney’s message for clients is a positive one.
“Sometimes people just need to be re-educated on their options
and that it’s okay for them to ask questions and be re-evaluated.
How can we help you from an equipment standpoint? But also
for the caregiver — how can we help the caregiver out to make it
easier for them? Let’s see what we can do. We just have to re-evaluate
and see what our options are.”
