By Ellen I. Leonard, M.D.
“Jason” was born 16 weeks premature, weighing
in at 1 pound, seven ounces. It was an auspicious start to a life where
every day was a fight for survival. He was discharged from the hospital
five months after delivery to a home divided by marital discord and
rife with sibling rebellion. He had poor oral intake, was delayed in
achieving developmental milestones, and had increased muscle tone but
with a normal range of motion. He was referred for further treatment
as an outpatient at Warm Springs Rehabilitation System.
That an heroic team effort was required for Jason to make it home
from the hospital is irrefutable – as was also undeniable the
fact that it would require the continuing effort of his pediatric physical
medicine and rehabilitation team to ensure that he continued his development
through childhood.
Pediatric Physical Medicine and Rehabilitation is a subspecialty of
Physical Medicine and Rehabilitation (PM&R), requiring either double
boarding (in pediatrics and in PM&R) or post-residency fellowship
training. The practice of PM&R takes a team approach to the treatment
of disabilities, whether congenital or acquired. The physiatrist leads
the team comprising nurses, occupational therapists, physical therapists,
speech therapists, case management professionals, patient, family,
and school. Pediatric physiatrists also diagnose and treat children
with neuro-muscular disorders, limb deficiencies, burns, pain, musculoskeletal
and joint injuries and disorders, spina bifida, cerebral palsy and
traumatic brain injuries.
In Jason’s case, as in all cases, the PM&R team’s
goal was to ensure that he be integrated into his family and into the
community in a manner that allowed him to realize his maximum potential.
The plan for his treatment included psychosocial counseling for family
members, speech therapy for oral stimulation, physical therapy and
occupational therapy for development and mobility, range of motion
handling and positioning. I made a referral to a gastroenterologist
for PEG placement to facilitate feeding. His orthopedic evaluation
consisted of a baseline AP pelvis and scoliosis series. One year into
his treatment, during which follow-up examinations were performed every
two to three months, the marital and sibling issues had been resolved
in Jason’s family, he was doing well nutritionally and was progressively
achieving his developmental milestones, and he no longer had primitive
reflexes. A Video Fluoroscopic Swallowing Study (VFSS, also known as
a “Modified Barium Swallow”) was performed in which it
was determined that no aspiration was occurring and that he was ready
for oral feeding.
Jason also illustrates well the fact that PM&R treatment in many
cases is dynamic and ongoing, always with a firm goal of realizing
maximum potential for the child. By the time he was three years old,
Jason was no longer eligible for Early Childhood Intervention (ECI)
programs and was ready to start school. Speech therapy continued, making
it possible for him to communicate with simple phrases. Thanks to physical
therapy and occupational therapy efforts he was sitting with minimal
support and ambulating with a walker. He had a spastic diplegic gait
due to increased muscle tone in his lower extremities. A trial
of oral medication for spasticity failed so he was referred to a spasticity
clinic for further evaluation. Jason’s spasticity was treated
with a Dorsal Rhizotomy.
By the time he celebrated his sixth birthday, Jason’s cognitive
development was in the mainstream and he was preparing to enter first
grade. He was ambulating independently with a walker and Ankle Foot
Orthoses (AFOs), and used a wheelchair for long distances such as field
trips with his class. He was participating in the sports program at
Warm Springs.
Jason and his brother went to camp together last summer, and his family
is planning a ski vacation in Winter Park, Colo. this winter. His parents
are expecting their third child in the spring.
The pediatric PM&R doctor must many times serve as an advocate
for the child and for their family, while orchestrating multi- and
inter-disciplinary care. While a return to “normal” in
many cases is not a possibility, good care will assist the patient
in assimilating back into their “normal” environment.
“Terry” is a 17-year-old high school student who sustained
a spinal cord injury – but no traumatic brain injury -- in a
motor vehicle accident. The acute care team called for a PM&R consult
to initiate a rehabilitation plan. In the acute care setting rehabilitation
goals were to prevent further complications and to begin Terry’s
education regarding her condition. Catheter and bowel management programs
were established, and a skin care program was begun to prevent decubitus.
Terry was then transferred to San Antonio Warm Springs Rehabilitation
Hospital where a team approach to her treatment was initiated. We repeatedly
discussed with Terry the fact that she was the most important member
of the team – the one that would do the most work, with the assistance
of other team members. We initiated schooling to ensure that Terry
could graduate from high school on time. Her treatment included physical
and occupational therapy to increase her strength and facilitate range
of motion, mobility, transfers and activities of daily living (ADLs).
We continued her education regarding her condition and prognosis that
was begun in the acute care facility. Our occupational therapists and
nurses assisted Terry with her ADLs, catheter and bowel programs, and
skin care.
We also initiated psychological counseling to assist Terry’s
adjustment to her disability, encouraged her participation in the Warm
Springs Sports Program as a means of assisting her integration into
the community, and worked with her family and friends to effect their
respective adjustments to her disability so they might facilitate her
re-integration into the community.
Case management activities included discharge planning, resolution
of funding and insurance issues, coordination and management of school
district resources, and planning for continued emotional support for
Terry.
Terry was discharged four weeks after her arrival at Warm Springs.
She was homebound for three weeks and then returned to her high school
classes. She is independent with her ADLs, independent with her catheter
and bowel management programs, and independent with transfers and propulsion
of her wheelchair.
Today Terry is an active participant in the Warm Springs sports program – in
ballet, and is taking driver training in a vehicle retrofitted with
hand controls so she may eventually attend her college classes without
assistance.
So many times we as a society look at people with disabilities and
have trouble seeing past those disabilities. But it is important that
we, as a society, do everything necessary to help all people focus
on their abilities. Prior to attending medical school I worked at a
ski area in New Mexico, as a ski instructor for people with disabilities.
One day I sat in the lodge with one of my students, a young man who
in his teens had been blinded by diabetes. Another group of students
entered
the lodge and sat with us. When he asked me why they weren’t
speaking, I informed him that they were deaf and that they were signing. “Deaf
people can ski? Imagine that,” he exclaimed. Meanwhile, the deaf
skiers were signing to each other their amazement that a blind person
could ski.
All of those skiers in my opinion possessed a very special quality – for
them, since they all focused only on their abilities, nothing was impossible.
We should all be like that.
About the author: Ellen I.
Leonard, M.D., a partner in South Texas PM&R, is the pediatric medical director for the Warm Springs Rehabilitation
System, which consists of four inpatient hospitals and 12 outpatient
clinics throughout South Texas. San Antonio Warm Springs Rehabilitation
Hospital is the only family-centered CARF (The Rehabilitation Accreditation
Commission) accredited facility in Texas. Dr. Leonard is board-certified
in Physical Medicine and Rehabilitation and is the only fellowship-trained
pediatric PM&R physician in San Antonio.
