CLEARWATER, Fla. — Many members of the Association of
Children’s Prosthetic-Orthotic Clinics (ACPOC) present at this year’s
Annual Meeting have spent their lives caring for patients with cerebral palsy
and other musculoskeletal disorders. One aspect of this treatment involves the
patients’ transition into adulthood.
During a symposium on this topic, Laura L. Tosi, MD, director of the
Bone Health Program at Children’s National Medical Center in Washington,
DC, offered her wish list to the group.
Tosi advised practitioners to assume that all of their patients will
outlive them — some may even live to be 100 years old. The key to
treatment must be ensuring these patients are able to live those years to the
|Laura L. Tosi|
“We owe it to them to be sure that they are free from pain, or at
least that the pain they have is minimized,” she said.
Whether that entails avoiding dislocation of the joints or correcting
problems brought on by scoliosis that prevent proper breathing, orthopedic
surgeons, orthotists and other allied health professionals must work together
to reduce or eliminate pain and discomfort.
“And certainly it is our work with the intramuscular skeletal
system that is going to primarily define their comfort,” she said.
Among her list of demands if she ran the world:
- Every child and adult with cerebral palsy has a complete
musculoskeletal exam annually. Non-ambulating children should also receive a
hip radiograph and a spine film.
- While those who need them should have access to wheelchairs, everyone
should maximize functional weight bearing to maintain strength and increase
- Parents and caregivers learn about bone health and how to increase
this for patients.
- Spines are monitored carefully.
- Stretching and fitness programs are as equally important in school
systems as English class.
“So, no — my patients are not going to be immortal; nor are
yours. But we do want our folks to be happy, bouncing down the streets if
humanly possible, happily and pain-free,” she said.
I had an opportunity to speak to a young adult [with cerebral palsy] who
is a triathlete, and she is with the Challenged Athletes Foundation. The one
comment she made that hit home was that in her family, they are all athletic.
She said she remembered that … her mother made her stretch every night,
and she hated it, but she saw the point now — that it kept her flexible.
The [point] is that … we can’t fight what’s not happening
in the home environment. That’s the challenge that we have every day with
our families. Athletic parents are going to have athletic children, but if you
have parents that don’t get up from the TV or don’t feed [the
children] the right nutritional food, that makes it so much more difficult.
— Sandra Smith, PT, MS
rehabilitation services, Shriners Rehabilitation Hospital for Children