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Comprehensive Care With Every Step

Comprehensive Care With Every Step

by | May 1, 2024 | Pediatric Developmental Disabilities

Previously published in Rite Up, 2024 – Issue 1.

Three-year-old Marley, of Palmer, pulls up to her physical therapy appointment at Scottish Rite for Children in her self-propelled wheelchair, lovingly named Marley’s Moo. “Marley has never met a stranger,” says her mother, Christina. “Everyone becomes her friend, and her presence fills the room.”
 
When the family got the wheelchair, Christina decorated it like a cow to encourage Marley to use it. Now, she maneuvers easily, wherever she wants to go. When she is not in her wheelchair, she gets around by crawling, but in physical therapy, she is learning how to walk using a gait trainer — an assistive device similar to a walker.

Marley was born with myelomeningocele, a form of spina bifida in which a fluid-filled sac containing neural tissue protruded from her back because the neural tube in her spine did not close completely. When she was 2 days old, a surgeon closed her back, and at 2 months old, a specialist referred her to Scottish Rite for Children where she receives comprehensive care through the Spina Bifida clinic.
 
While spina bifida primarily affects the nervous system, it can also impact related body systems, such as bowel, bladder and mobility. Marley’s multidisciplinary team includes experts from Pediatric Developmental Disabilities, Orthopedics, Urology, and Physical and Occupational Therapy. “They see her from head to toe,” Christina says. “Scottish Rite has become our hub, and it’s convenient because they line up all of our appointments on one day.”

Spina bifida affects Marley’s mobility, causing developmental delay. She started crawling at age 2. Then, the family built parallel bars to help her learn to stand and walk. “She was doing great on that, but for some reason she did not want to be in her walker,” Christina says.

At Scottish Rite, physical therapist Meredith Porteous found creative ways to motivate Marley to use her gait trainer. She also recommended adjustments, providing armrest attachments to help keep Marley upright and more comfortable. “Meredith has been great with Marley,” Christina says. “She’s on her hands and knees right along with her, helping her. Marley has really come around and asks to be in her walker. It’s been a game changer.”

After moving forward in her gait trainer, Marley is learning how to turn. “Scottish Rite has been a guidepost for us every step of the way,” Christina says. “We’re really hopeful for Marley’s mobility journey. We’re ready to see her conquer the world.”

Read the full issue.

Cerebral Palsy Clinic: Your Child’s Care and What To Expect

Cerebral Palsy Clinic: Your Child’s Care and What To Expect

by | Mar 17, 2023 | Neurology

At Scottish Rite for Children, our experts provide care to the whole child – body, mind and spirit. The Neurology and Rehabilitation Medicine department sees children with orthopedic issues who also have related neurological disorders and neuromuscular diseases. One of the most common conditions seen by this team is cerebral palsy (CP).

Like all conditions, the severity of cerebral palsy can vary depending on the child and requires a multidisciplinary team to determine the best treatment options. With several factors that play into this diagnosis, we understand that as a parent or caregiver it can be challenging to navigate through the care plan for a child with cerebral palsy. Below is what you need to know about our specialized cerebral palsy clinic at Scottish Rite.

Who is part of the CP team?

  • Orthopedic Surgery
    • A pediatric orthopedic surgeon focuses on evaluating and monitoring for operative interventions to address function and pain.
  • Pediatric Rehabilitation Medicine (PRM)
    • PRM focuses on evaluating and monitoring the child for nonoperative interventions, including bracing, casting, tone medications, botulinum injections, equipment and therapies with the goal of optimizing function and reducing pain.
  • Neurology
    • This team treats the active neurological conditions such as seizures.
  • Advanced practice providers (APP)
    • The APPs work with both the neurologists and pediatric rehabilitation specialists to provide holistic care.
  • Nursing
    • This team coordinates and organizes each of the multidisciplinary teams and ensures that education is tailored to the needs of each patient.
  • Orthotics
    • A team of orthotists work with the teams to evaluate, fit and fabricate braces used to help your child’s mobility.
  • Physical Therapy (PT)
    • PT works with the child to improve functional mobility, with or without their needed equipment.
  • Occupational Therapy (OT)
    • OT focuses on activities of daily living, upper extremity function and the use of equipment needed to help your child function.
  • Therapeutic Recreation (TR)
    • TR works with the patient to promote activities and participation through peer interactions and relationships, such as adaptive sports, games and more.
  • Psychology
    • Our team of pediatric psychologists manage the psychological well-being of the child and helps them with strategies to overcome barriers to the treatment plan.
  • Developmental and Behavioral Pediatrics
    • This team optimizes nutrition, feeding and medical comorbidities and manages behavioral differences.

What can a parent/child expect when come to the CP clinic?

  • The child will first be seen by our motor control nurse who will go over medications and safety questions.
  • One of the neurology/rehabilitation medicine APPs will continue the visit.
  • A video recording will be conducted of the child for their gait to be analyzed so the team can compare changes that occur throughout time.
  • The pediatric rehabilitation medicine specialist and the APPs will then complete the visit and explain the plan to the patient and parent/caregiver.
  • Depending on the clinic and specific needs, the patient may also be seen by a pediatric orthopedic surgeon, orthotist, physical and/or occupational therapist, pediatric psychologist or a recreational therapist. When appropriate, referrals are also made to the other cerebral palsy experts.

How often are clinic appointments?

  • Children younger than 5 are typically seen every three to four months. Since this is a period of rapid growth and development, our team of experts want to make sure that they are monitoring the patient’s growth closely and intervening in any way needed to promote healthy and happy development.
  • Children between ages 6 to 12 are seen about every six months but may require visits more often if they are in the middle of a growth spurt.
  • After a child has completed their growth spurt, the team typically sees them between every six months to a year.

Pediatric rehabilitation medicine physician Fabiola I. Reyes, M.D., works closely with this patient population. “I am honored to have the opportunity to provide care to these kids,” Reyes says. “In the CP clinic, we pride ourselves in making sure that both the child and parent/guardian understand and feel comfortable with every step of the treatment plan. Although your child may have several specialists caring for them, which can be overwhelming, our team is here to walk you through the process – making sure the patient remains our priority.”

Learn more about the Neurology and Rehabilitation Medicine department.