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Two Paths, One Goal: Twins Take on Tuberous Sclerosis Complex

Two Paths, One Goal: Twins Take on Tuberous Sclerosis Complex

by | Oct 14, 2024 | Neurology

Izzy and Gabby are 7-year-old sisters who have more in common than being twins! They enjoy spending time in the great outdoors and hiking as a family at state parks. While Izzy is more interested in animals, Gabby’s focus is on climbing anything she manage to reach.  With an unbreakable bond, they rely on each other as they take on life with tuberous sclerosis complex (TSC).

Delivered prematurely, Izzy and Gabby spent a month in the NICU receiving tests, such as CT scans and MRIs. Doctors found brain tumors and rhabdomyomas, a benign tumor that clusters in the heart, in both twins. Izzy and Gabby were quickly diagnosed with TSC.

TSC is a rare genetic disease that causes tumors to grow in various organs, like the brain, heart, kidney, eyes and lungs. Although there is no cure yet, early diagnosis and intervention is proven to help manage the condition effectively.

After researching options, Izzy and Gabby’s family relocated from Montana to Big Sandy, Texas, to receive care from TSC expert Steven Sparagana, M.D., and his team at Scottish Rite for Children. Since TSC varies in each case, creating personalized care plans for Izzy and Gabby were key to helping them reach their goals and get back to enjoying their childhoods. Dr. Sparagana is now retired, but experts in our Neurology and Rehabilitation Medicine department continue to conduct research to advancing treatment methods for this condition and have specialized experience in the management of TSC, making care at Scottish Rite a top choice for Izzy and Gabby’s family.

“We acted purely on faith,” says Izzy and Gabby’s mother, Danys. “We felt like this was the best chance to find answers, and this was the best decision we ever made. God answered our prayers with the team at Scottish Rite.”

Izzy’s case of TSC was more strenuous on her health than Gabby’s when the girls were babies. Both sisters started having seizures shortly after their first birthday. However, Izzy averaged between eight to 12 seizures on her worse days, while Gabby experienced around one to two seizures a day.

“While Gabby was developing and learning,” says Danys, “Izzy was sleeping her days and nights away due to the physical exhaustion from the seizures.”

Treatment methods for TSC are continually evolving, and ongoing advancements are improving TSC patients’ quality of life. Gabby’s current treatment includes medication to control her seizures. Izzy’s seizures have also improved with medication after neurologists found her seizures resembled infantile spasms, which are shorter forms of a seizure and are typically seen in infants under 12 months old.

As they continue treatment, Izzy and Gabby rely on their Scottish Rite care team and family for ample support as they grow. Since starting their new medications, the twins have not experienced any more seizures. Through careful monitoring and support, Izzy and Gabby make more and more improvements. While their journey isn’t over, they are on the right track. Now, they focus on exploring new activities! Izzy is part of a cheerleading team, and Gabby is in gymnastics.

“It’s our family’s goal to one day be on the donor wall,” says Danys, “So we can continue supporting the amazing work Scottish Rite does. The care and treatment our daughters received is crucial to how they are thriving in the ways they do now.”

Izzy and Gabby, we are so proud of your growth and cannot wait to see what adventures you two embark on next!

 

Do you have a story? We want to hear it! Share your story with us.

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.

Pediatric Neurology at Scottish Rite for Children

Pediatric Neurology at Scottish Rite for Children

by | Mar 22, 2023 | Neurology

As an institution dedicated to giving children back their childhood, our experts provide a full spectrum of care to make sure all aspects of a condition are treated. Whether common or complex, many of the orthopedic diagnoses seen by our team have other associated conditions which require treatment.

Experts from our Neurology and Rehabilitation Medicine department see children who have various neurological disorders and neuromuscular diseases. Although each condition varies when it comes to its severity, every child seen by this team receives world-renowned care with the ultimate goal of helping them live a more independent life. Learn more about pediatric neurology below.

What is pediatric neurology? 
Pediatric neurology is the treatment of conditions that affect the nervous system including the brain, spinal cord, peripheral nerves and muscles. This can include disorders such as migraines, epilepsy, developmental delay and neuromuscular conditions.

Meet the Experts
Michelle R. Christie, M.D.
Child and Adolescent Neurologist and Clinical Neurophysiologist  
Christie sees all neurologic conditions with a focus on Charcot Marie Tooth, holoprosencephaly and hereditary spastic paraplegia.

Fabiola I. Reyes, M.D.
Pediatric Physical Medicine & Rehabilitation Physician
Reyes provides care to patients who have trouble with motor control.

Common Conditions Treated by the Team

  • Cerebral palsy
  • Epilepsy
  • Migraines
  • Developmental delay
  • Congenital birth defects of the nervous system
  • Genetic diseases of the nervous system
  • Neuromuscular disorders including myopathies, Charcot Marie tooth, brachial plexopathies and traumatic nerve injury
  • Tuberous sclerosis
  • Holoprosencephaly
  • Hereditary spastic paraplegia

Multidisciplinary Approach to Care
The Neurology and Rehabilitation Medicine department includes staff from various areas of specialty. This helps to ensure that no matter what a child may need, we have an expert to provide the best treatment options for any aspect of the condition. Patients seen by our Neurology experts may also interact with advanced practice providers (APP), nurses, pediatric psychologists, recreational therapists, orthotics, and physical and occupational therapy.

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.

Share Your Story: A Lifetime of Golf

Share Your Story: A Lifetime of Golf

by | Jul 6, 2022 | Neurology

Meet Ford, a patient who was treated by our multidisciplinary team of experts.

Blog written by Ford.

My name is Ford. I am 26 years old and also have cerebral palsy. When I was 10 years old, I had surgery on my legs at Scottish Rite for Children. The year before, I started participating in Learn to Golf and attended my first Learn to Golf clinic at a course in Lubbock, TX.

Learn to Golf introduced me to the sport and has since allowed me to play a game that changed my life!

When I would attend a Learn to Golf clinic, I would receive access to this wonderful game, as well as receive personalized instruction and equipment.

Golf is a sport that I plan on playing my entire life and to this day, I have many friends that I have made through the game. Golf keeps me motivated to care for myself and stay in shape throughout the ups and downs of life.

Words cannot express the level of gratitude that I have for Scottish Rite and Dana Dempsey. Dana not only works to serve children who have medical issues, but she also makes sure patients find joy in their lives! I am forever grateful for Scottish Rite, and if you have even the slightest interest in golf, you should participate in a Learn to Golf clinic.

The older I get, the more I understand how special Scottish Rite is. I don’t think anyone really wants to be in the hospital, but when you are at Scottish Rite, everyone there makes an effort for you to feel comfortable and welcome. I haven’t had an operation at Scottish Rite since 2007, but every time I pick up a golf club, I am reminded of the impact the hospital had on my life.

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

Cerebral Palsy: Defining the Common Terms

Cerebral Palsy: Defining the Common Terms

by | Mar 23, 2022 | Neurology

Cerebral palsy (CP) is a condition that affects posture, movement and balance associated with an injury to the developing brain. The injury is static (does not worsen) and occurs before or during infancy. Scottish Rite for Children provides a multidisciplinary approach to care for children diagnosed with CP. Below are the most common terms used when our team is talking with patients and families about the condition. 

Motor Difference

  • Hypertonia – Increased muscle tone or a tendency for muscle to be tight.
  • Hypotonia – Low muscle tone, or a tendency for muscles to be excessively relaxed.
  • Dyskinesia – Excessive muscle movements.
  • Spasticity – Muscle tightness that manifests as a catch and release when a limb is moved quickly about a joint. This type of muscle tightness is constant and consistent throughout the day.
  • Dystonia – Muscle tightness that occurs because of unintended muscle activation. This type of muscle tightness can occur when an individual is trying to move other body parts or with certain emotions.
  • Ataxia – Motor pattern that describes difficulties with balance and difficulty with performing smooth limb movements.

Anatomic Involvement

  • Diplegic cerebral palsy – This term describes a motor difference that involves both legs.
  • Hemiplegic cerebral palsy – This term describes a motor difference that involves one side of the body and including the leg and arm on the same side.
  • Quadriplegic cerebral palsy – This term describes a motor difference that involves all four limbs.
  • Triplegic cerebral palsy – This term describes a motor difference involves both legs, and one arm.

Motor Classification

  • Gross Motor Functional Classification System (GMFCS) – This is a system used by clinicians to categorize how a person with CP moves and functions in different environments. It helps clinicians come up with treatment plans and anticipate changes that can occur in the body as the individual ages.
  • GMFCS I – Individuals in this category of mobility are able to go walk around their environment with little to no help. They can go up and down stairs without holding on to a handrail.
  • GMFCS II – Individuals in this category of mobility may need more help when walking on uneven surfaces or inclines and can go up and down stairs by using a handrail.
  • GMFCS III – Individuals in this category of mobility use an assistive device to walk community distances, such as a walker or crutches. They may use a wheelchair for longer community distances
  • GMFCS IV – Individuals in this category of mobility use a wheelchair for most of their mobility. They may be able to propel manual wheelchairs without any help, and they require little to no head and trunk support when sitting.
  • GMFCS V – Individuals in this category of mobility use the wheelchair for all of their mobility. They may be able to drive a motorized wheelchair and typically need head and trunk support when sitting.

Related Neurologic Findings

  • Periventricular Leukomalacia – This is a pattern that is seen on brain imaging that indicates scarring around the ventricles (the area of the brain that hold spinal fluid). It is usually associated with injury to the vessels around the ventricles in premature infants and affects both sides of the brain.
  • Hydrocephalus – This is a finding on imaging that indicates that the ventricles are enlarged.
  • Porencephaly – This is a pattern on brain imaging that indicates a local injury to a specific area of the brain. It usually affects only one side of the brain.

Related Orthopedic Diagnoses

  • Contracture – This describes a limitation in range of motion at a joint. There are multiple factors that contribute to contractures.
  • Hip migration – Tendency for the femur bone to become uncovered by the hip bone. This can occur in individuals with weakness or increased tone.
  • Neuromuscular scoliosis – A curvature of the spine that is related to weak or spastic muscles.