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Lillie’s Leap of Faith: From Cerebral Palsy Patient to Future Journalist

Lillie’s Leap of Faith: From Cerebral Palsy Patient to Future Journalist

by | Nov 15, 2024 | Neurology

As soon as you step through the doors at Scottish Rite for Children, patients and their families are immediately embraced by a culture dedicated to fostering lifelong connections. When a patient completes treatment, staying connected beyond their time at Scottish Rite remains fundamental.

Former patient 20-year-old Lillie, of Arlington, describes her care journey as transformative and miraculous. “I’ve found so many friends who were also Scottish Rite patients,” Lillie says. “We’ve been able to bond as patients and as people living with different abilities.” Lillie was diagnosed with Hemiplegic cerebral palsy (CP), a condition that affects the posture, movement and balance on one side. Her case of CP resulted in a limb difference in her left leg.

Lillie started coming to Scottish Rite in 2021 when she was a senior in high school. Her physician referred her for multidisciplinary care after noticing changes in her walking, a symptom of her limb difference that had started causing foot and ankle pain. Orthopedic pediatric surgeon Jaysson T. Brooks, M.D. performed a surgery called gastrocnemius recession – a procedure that lengthens the calf muscles and tendons. Then, Scottish Rite orthotists designed a custom ankle-foot orthosis to stabilize her ankle and foot. “From buying two boxes of the magical popcorn to updating Dr. Brooks on all the fun things I’m up to,” says Lillie. “Scottish Rite is a miracle to me.” 

The support she received from her Scottish Rite care team would ultimately prepare her for her next journey she would embark on – college. Her entire care team was invested in preparing Lillie’s condition for life at her college of choice, Texas Christian University (TCU). As a parting gift, Lillie received Scottish Rite’s Legacy Scholarship to pursue a degree in journalism and confidently chase her dreams. “Cerebral palsy may sound intimidating at first,” says Lillie, “But just know there’s a community of people with cerebral palsy who are scientists, comedians, journalists and more. We are here, we are brave, we are beautiful and we are limitless.”

Lillie has gone from undergoing surgery to now conquering the world of journalism. She aspires to ask questions about the world and write stories based on the answers, much like her fellow TCU alumnus and role model journalist Bob Schieffer. “To kids with CP, you are perfect,” Lillie says. “The way you walk is perfect, your wheelchair is cool, your leg braces are awesome and your surgery scars are epic! Being who you are is the ultimate superpower, and no one take that away from you.” We can’t wait to see the great things you accomplish, Lillie!

Mastering Daily Tasks To Help Others Feel Their Best

Mastering Daily Tasks To Help Others Feel Their Best

by | Jul 12, 2024 | Neurology

Previously published in Rite Up, 2024 – Issue 2.

Fifteen-year-old Zion, of Glenn Heights, is preparing to become an esthetician when she graduates from high school. Her mother, Tiffany, bought her a mannequin that she uses to practice giving facials and applying makeup. “I want to make people feel good about themselves,” Zion says. “Being an esthetician will help people relax.” Recently, Zion brought her mannequin to Scottish Rite where she works with occupational therapist Lucy Ericson on mastering a host of daily activities.

Zion has cerebral palsy (CP) and has received care at Scottish Rite for Children since she was 10, after her family moved to Texas from Arizona. CP is the most common childhood disorder that affects muscles and movement. Zion’s symptoms impact her mobility, muscle coordination, flexibility and posture.

“It’s hard to walk around the mall, our neighborhood or around school because classes aren’t close together,” Zion says. She uses a wheelchair for long distances. “Sometimes, I force myself to walk, but I get very tired.” She also finds it challenging to do things with her right hand, like twisting open a jar, pouring juice or writing essays. “It’s hard keeping my hand straight,” she says, “but that’s why we go to Lucy.”

In occupational therapy, Zion works through a list of tasks that she conquers one by one. Lucy has helped her find creative ways to brush her teeth, wash her skin, cook food, open a pill bottle, roll her wheelchair by herself, get binders in and out of her backpack, put on earrings and apply makeup, like eye shadow and lip gloss. “It makes me feel really good,” Zion says. “I never thought I was going to be able to do all that stuff by myself.”

As tasks get easier for Zion to achieve, she prepares for her future as an esthetician. “Zion wants to be ready when she graduates so there aren’t any barriers,” Tiffany says. In a session with Lucy, Zion massages the mannequin’s face with shaving cream. “We’re not using the high-end stuff on a mannequin,” Tiffany says, laughing, but then, her tone turns bittersweet as she considers the years they have spent at Scottish Rite. “They make us feel like we are part of one big family,” she says. Zion underscores how much it means to her. “I really love, gosh, all the people,” she says. “I couldn’t imagine myself being able to do what I can do without Scottish Rite’s help.”

Read the full issue.

Botulinum Toxin: How Botox Injections Help Treat Children with Cerebral Palsy and other Neuromuscular conditions

Botulinum Toxin: How Botox Injections Help Treat Children with Cerebral Palsy and other Neuromuscular conditions

by | Sep 15, 2023 | Pediatric Developmental Disabilities

At Scottish Rite for Children, our experts in Neurology and Rehabilitation Medicine care for patients with cerebral palsy using a variety of treatment methods. Treating the symptoms of CP can take many forms, and one common treatment for spasticity, or abnormal muscle tightness and stiffness, is the use of botulinum toxin (BT) injections. Known under name brands like Botox or Dysport, pediatric physical medicine and rehabilitation physician Fabiola I. Reyes, M.D., shares what parents need to know about this treatment.
 
What are botulinum toxin injections?
Botulinum toxin type A is a substance produced by the bacteria Clostridium botulinum. While toxic when ingested orally, the substance can be purified and safely injected locally in muscle tissue to treat a variety of conditions, including spasticity. It can be formulated in different ways and comes manufactured under different brand names like other pharmaceutical drugs.
 
How long has it been around?
BT injections have been used for patients with cerebral palsy for about 25 years. It was approved by the Food and Drug Administration in 1989 for eye conditions and muscle spasms in the face but has since been studied and approved for use with several other neuromuscular disorders.
 
How does it work?
Spasticity can make moving difficult, cause pain, loss of sleep and interrupt daily living activities due to the involuntary muscle tightness. When injected, BT injections work by blocking the chemical signal between nerves and muscles that cause contracting and tightening of the muscles. This can help relax muscles in the area around the injection site, although the effects are not permanent.
 
Is it safe?
BT injections have been used to safely treat spasticity in patients with cerebral palsy for more than 25 years. BT injections have been studied extensively by doctors and researchers all around the world and is approved to treat a variety of conditions and is even used for cosmetic purposes to prevent wrinkles.
 
BT injections were approved to treat spasticity in children with cerebral palsy in 2019. The safety and efficacy of the treatment has been backed by studies and trials in children ages 2 to 17 years.
 
Why use it for treatment?
In patients with cerebral palsy, BT injections have been found to improve range of motion, gait pattern, joint positioning and stability while reducing pain in the muscles, spasticity and tension.
 
BT injections are easy to administer, and the procedure can be performed in an outpatient setting. When giving injections, the provider will identify the muscles that need to be targeted. Multiple injections may be required for larger muscles or muscle groups, but the actual injection procedure only takes a few minutes.
 
How often does it need to be done?
Typically, BT injections prevent muscle tension in the injected areas for about three months, after which the effects may begin to decrease. The length of efficacy will differ for each patient.
 
What are the side effects?
The side effects of BT injections are minimal. The most common side effects are temporary weakness and injection site pain, but these effects occur in less than 10 percent of patients.
 
Learn more about our care for children with cerebral palsy.

An Affirmation of Independence

An Affirmation of Independence

by | May 8, 2023 | Pediatric Developmental Disabilities

Published in Rite Up, 2023 – Issue 1. 

I’m brave. I’m strong. I’m beautiful. I’m perfect — just the way God made me,” says 8-year-old Jordynn, of Crowley, with her mother, DeAdriene. Together, they practice daily affirmations. “Because of Jordynn’s condition, she is different,” DeAdriene says. “When you’re different, it can be a confidence killer. I want her to be the best version of herself that she can be.”
 
Jordynn was born at 30 weeks and spent six weeks in the NICU. At her 12-month appointment, she could not sit up or walk. Her pediatrician said not to worry about walking until she was 18 months old. “At 18 months, Jordynn still wasn’t sitting up,” DeAdriene says. “We’d have to prop her up in a corner.”

A month later, Jordynn was diagnosed with cerebral palsy, a neurological disorder that affects a person’s ability to move. Jordynn’s condition was caused by periventricular leukomalacia, a type of brain injury that is common in very premature babies. In Jordynn’s case, it affected her legs the most. “When we found out, it was really hard,” DeAdriene says. “We were seeing all these doctors, and they said she would never walk independently.”

Jordynn began wearing leg braces, and at age 3, received a gait trainer — an assistive device similar to a walker that supports a child’s mobility. For long distances, she used a wheelchair. As Jordynn grew, she began taking steps on her own, but she could not put her right foot flat on the ground. “The position of her foot was horrible,” DeAdriene says. “Her braces had stopped working because her muscles were so tight.”

DeAdriene had heard about a surgery that she thought could help. When Jordynn was 5, she was referred to Scottish Rite for Children where they sought advice from a team of cerebral palsy experts, including Lane Wimberly, M.D., medical director of movement science and pediatric orthopedic surgeon, and Fabiola I. Reyes, M.D., pediatric physical medicine and rehabilitation physician.

Jordynn underwent a thorough evaluation, including a gait analysis in Scottish Rite’s Movement Science Lab. The analysis measured Jordynn’s walking ability, which aided in designing a customized treatment plan. Through surgery, Dr. Wimberly lengthened her Achilles tendon and hamstring to get her foot into a neutral position. Over the next year, Jordynn regained strength through physical therapy and home exercises. During that time, Dr. Reyes provided tone management by prescribing medication to relieve Jordynn’s muscle spasms, which completely resolved her pain.

“Scottish Rite has exceeded our expectations,” DeAdriene says. “Jordynn is not only walking, she’s running around with her friends. She’s even on the dance team at school!” “Jordynn is happy and active,” Dr. Reyes says, “and that is our ultimate goal for our patients.”

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.