Page 19 - Mobility Management, May/June 2021

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 experi- ence 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 spas- ticity 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
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