Courage in Motion

Courage in Motion

Previously published in Rite Up, 2024 – Issue 3.

Eight-year-old Déborah aspires to be an athlete like her role model Darlene Hunter, a 2016 Paralympic gold medalist for Team USA’s wheelchair basketball team. Déborah actively engages in dance, golf, tennis, softball and swimming with recreational teams in Dallas, like Team IMPACT for softball and the Dallas Wheelchair Tennis Club. “I am Déborah’s No. 1 fan,” says her mother, Michelle. “I know she will be great at any sport. She has always defied the odds since the womb.”

Originally from El Salvador, Déborah was born with no left arm or leg. Her parents searched for care after her birth throughout Central America, and, in 2019, they discovered Scottish Rite for Children.

Déborah’s multidisciplinary care team includes experts from Occupational and Physical Therapy, Scoliosis, Orthotics and Prosthetics, and Therapeutic Recreation. Her passion for sports was fueled by Director of Therapeutic Recreation Dana Dempsey and recreational therapist Karla Palacios-Reagor. “I can’t say enough about the dedication of Dana and Karla,” Michelle says. “They are extremely special and make teaching children how to love a sport easy.”

Therapeutic Recreation services empower children to engage in recreation, leisure and sports in their communities. Déborah’s goals included using community leisure resources, boosting her strength and confidence, and maintaining independence. While Karla designed the exercise plan, Déborah challenged herself to tackle different sports.

Déborah recently accepted the challenge of learning to ride a bike. She trained with an adaptive hand bike, tailored for her limb absence. Building coordination, upper body strength and balance were key to independently ride. “Déborah would come to my sessions and flex her arm or stand up by herself to show me how strong she is,” Karla says. “It is great to see her confidence boost.” After six months, Déborah rode her bike fearlessly with  minimal help, completing her Therapeutic Recreation journey!

The possibilities are endless regarding which sport Déborah will try next, and Michelle is behind her to celebrate every triumph. “Never let a physical condition determine the bright future your child will have,” Michelle says. “We are extremely grateful and blessed to find the best care for our greatest treasure.”

Cooper the Trouper: On a Mission to Mobilize

Cooper the Trouper: On a Mission to Mobilize

Previously published in Rite Up, 2024 – Issue 3.

by Kristi Shewmaker

“I can’t wait for you to see the little tricycle up in the ceiling,” BJ said to his wife, Ashley, when they arrived at Scottish Rite for Children in January 2023. Ashley and BJ Burton drove from their home in College Station with their 2-month-old son Cooper to see Scott Oishi, M.D., FACS, hand surgeon and director of the Center for Excellence in Hand.

BJ was referring to the “Flying Machine,” a giant dirigible, or airship, powered by aviators and teddy bears that hangs from the ceiling in the Atrium of Scottish Rite’s Dallas campus. The “Flying Machine” has delighted children and families since 1978. It represents mobility for the patients of Scottish Rite. BJ remembered it fondly from his time at the hospital as a child when he received treatment for a rare form of congenital arthrogryposis, a condition that affects the joints and causes contractures that limit movement. His case affected his hands and feet.

When Ashley was 30 weeks pregnant, a 4D ultrasound revealed that Cooper’s hands were, in BJ’s words, “drifting.” Ulnar drift is a hand deformity that occurs when the joints contract and cause the fingers to bend toward the pinky finger, a symptom of arthrogryposis. “We noticed his hands first, so we started to prepare ourselves,” BJ says. When Cooper was born, BJ saw that his feet were deformed as well. “I knew they weren’t clubfeet because I had clubfeet,” he says. “The people at the hospital didn’t know, and they were spitting out all kinds of disheartening things. Obviously, that’s not what you want to hear less than 24 hours into the birth of your child.”

At Scottish Rite, where BJ had found hope years ago, Dr. Oishi evaluated Cooper and confirmed a diagnosis of arthrogryposis. The Burtons learned that when Dr. Oishi came to Scottish Rite, his mentor was hand surgeon Marybeth Ezaki, M.D., who was BJ’s physician when he was a child. Scottish Rite for Children was the first pediatric orthopedic facility in the United States to employ full-time hand surgeons. “It was really comforting for me,” BJ says. “Knowing that I got great care at Scottish Rite, I knew that care would transition to Cooper as well.”

For Cooper’s hands, Dr. Oishi prescribed splints to wear at night and at nap time to stretch his fingers and keep his thumbs from tucking into his palms. For his feet, Dr. Oishi referred the family to Anthony I. Riccio, M.D., pediatric orthopedic surgeon and director of the Center for Excellence in Foot.

Dr. Riccio diagnosed Cooper with congenital vertical talus, a rare, complex foot deformity that causes the sole of a child’s foot to flex in a convex position, forming a rocker-bottom appearance. A bone in the ankle, the talus, connects the lower leg bone, or tibia, to the foot. “The talus is normally positioned at about a 90 degree angle to the tibia, but in a congenital vertical talus, the talus points straight down,” Dr. Riccio says. “Because the talus is the central and most important bone in the ankle and foot, the bones around it fold up on either side, resulting in a V-shaped foot.” Affecting 1 in 10,000 births, the condition can occur in children with no other conditions, as well as those who have a variety of syndromes, like arthrogryposis. “We had never heard of vertical talus,” BJ says. “I knew that Cooper would face challenges, and I was torn apart because I felt responsible.”

“I was terrified that he wasn’t going to be able to walk,” Ashley says, “but I remember Dr. Riccio saying, ‘He will be able to walk. He will be able to play baseball,’ and that meant a lot to us.” The Burtons are a baseball family. BJ coaches varsity at A&M Consolidated, a local high school.

Cooper would need surgery on both feet, but first, Dr. Riccio prepared him for the operation by gently stretching and realigning his feet through manual manipulation and casting. For two months, the Burtons drove back and forth from College Station every week as Cooper received a series of seven casts. When Cooper was 6 months old, he underwent surgery. Dr. Riccio ensured that his joint was aligned, stabilized it with a pin and then released his Achilles tendon, which brought his foot into the correct position. Cooper came out of surgery with a long cast on each leg. After six weeks, the casts were removed, and he wore a boots and bar brace, which is comprised of special shoes, or boots, that are connected by a metal bar that kept his feet in the corrected position. He wore the brace 23 hours a day until he pulled up to stand when he was 10 months old.

To promote walking, Cooper transitioned to wearing an ankle foot orthosis (AFO) on each foot during the day and the boots and bar at night. “He started walking along the couch and pushing his little push toy,” Ashley says. And then, at 14 months old, Cooper walked on his own. “We thought he was going to be severely behind developmentally, but he’s right on track,” she says.

Today, Cooper is walking all over the place. “Nobody would ever guess he went through bilateral foot surgery,” BJ says. “He’s already hitting a ball off a tee and running to the front door like it’s a base, and then he comes back with a huge smile on his face!”

Dr. Riccio says, “The outcome is exactly what I hoped it would be — it’s a perfectly aligned foot.” Cooper will continue to wear the AFOs as he grows and the boots and bar at night until he is 4. Because the condition can recur, Dr. Riccio will monitor Cooper’s feet as he gets older, and Dr. Oishi will continue to treat his hands. “We definitely found the best of the best at Scottish Rite for everything,” Ashley says. BJ concurs, “The moment we got there, we just knew that this was the place we were supposed to be.”

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

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

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.

Anxiety in Children with Dyslexia

Anxiety in Children with Dyslexia

Anxiety is one of the most common mental health challenges in children, and it affects one in eight children in the United States. While the condition is not unusual, it can present many challenges for those who experience it, especially in academics and education. Our team in the Luke Waites Center for Dyslexia and Learning Disorders shares what parents need to know about anxiety and how to help their child cope. 
 
What is anxiety?
Anxiety has two important components: psychological symptoms, such as feelings of fear or worry, and physiological symptoms, such as feeling dizzy or shaky, having trouble breathing, headaches, stomachaches or trouble sleeping. For many children, anxiety is a typical emotion and is not a hinderance to their daily life. For others, persistent anxiety can cause problems at home, with friends and in school or in activities.
 
What is normal anxiety versus anxiety requiring a diagnosis?
Typical anxiety that is expected in children is manageable, doesn’t last very long and does not usually go along with significant physical symptoms. However, anxiety that is persistent or longer in duration, includes symptoms that interfere with functioning and causes physical symptoms may indicate that an anxiety disorder is present.
 
What is generalized anxiety disorder (GAD)?
According to the American Psychiatric Association, generalized anxiety disorder (GAD) consists of excessive anxiety and worry occurring about several events or activities on more days than not for at least six months. The disorder can be associated with restlessness, mental fatigue, trouble concentrating, muscle tension and sleep disturbance. The condition is rarely identified prior to adolescence, and approximately one percent of adolescents experience GAD over the course of a year. GAD is often associated with academic difficulties.
 
How does anxiety affect education and learning habits?
Anxiety can significantly impact a child’s performance and confidence in the academic setting. Symptoms like difficulty concentrating or restlessness can prevent a student from taking in new information, while fear and worry can affect his or her retention of information, long-term memory and working memory. This can lead to anxiety around test-taking, which further impacts the child’s ability to successfully learn new information. For someone with dyslexia, anxiety presents as an additional obstacle in their learning. However, with the appropriate dyslexia intervention, accommodations and supports, academic worries can decrease.
 
How can anxiety around school or test-taking be improved?
There are multiple factors that contribute to test-taking anxiety or anxiety about performance in academics. Tools that might help with this type of anxiety include changing either behavior or cognitions (thoughts), developing better study skills or developing better test-taking skills. Additionally, biofeedback paired with relaxation techniques has also been shown to be beneficial. If the anxiety around test-taking or school is more severe, consulting with an educational therapist might be needed. There are accommodations that could be requested for those children with learning disorders and/or dyslexia, such as extra time, preferential seating, check-ins for understanding, quiet environment, among others.
 
How to cope with anxiety
There are many ways to help your child learn to manage their anxiety or nervousness. Some techniques that can be implemented at home include:

  • Writing in a journal, coloring or drawing – sometimes it is easier to write or draw than talk.
  • Using a coping skills toolbox – fill a box with sensory items, things your child likes and calming/soothing items for your child to use.
  • Meditation – meditating can help reduce stress and improve sleep and emotional regulation.
  • Relaxing spot – create a place for your child to visit when they are feeling anxious or overwhelmed. This spot should not be used as a time-out spot.
  • Asking for help – it’s important that your child knows to ask for help when they need it.

 
Often anxiety interferes with activities outside of the home. Some different tools to cope with anxiety in public are:
 

  • Box breathing – slowly inhale through your nose to the count of four, and slowly exhale through your mouth while counting to four. (We have or are about to have a video for this. We also have a stress guide that psychology created.)
  • Grounding techniques – focus on five things you can see, four things you touch, three things you can hear, two things you can smell and one thing you can taste. This encourages children to focus on things around them rather than their anxiety.
  • Five finger breathing – spread your hand and stretch your fingers out like a star. Then, use your pointer finger of your other hand and trace around the outline of your hands and fingers. Breathe out as you slide down and breathe in as you slide up your finger.
  • Help from a teacher – work with your child’s teacher(s) to create a signal that your child is experiencing anxiety and needs a break, such as placing a highlighter on their desk.

When to consider therapy
Anxiety can be a normal emotion for children, but children that are excessively anxious or struggling with activities may benefit from therapy. Therapy can provide a safe space for kids and teens to talk through their worries and identify thoughts that are unhelpful or untrue. There are many different types of therapy, such as:
 

  • Cognitive behavioral therapy
  • Play/pediatric talk therapy
  • Expressive therapy (art/music)
  • Group therapy
  • Family therapy

Anxiety can be a lifelong condition, but it can be managed and improved with the proper support. For children coping with a diagnosis of a medical condition or a learning disorder, there are many places to turn for assistance. If you are concerned about your child’s anxiety, please contact your pediatrician or primary health care provider for assistance.
 
Learn more about the Luke Waites Center for Dyslexia and Learning Disorders.

Musculoskeletal Ultrasound: How It Helps Your Child

Musculoskeletal Ultrasound: How It Helps Your Child

Sports medicine physician Jacob C. Jones, M.D., RMSK, is a musculoskeletal ultrasound expert with advanced training in using ultrasound to evaluate and treat sport-related injuries in children and teens. This commonly used technology uses sound waves to create pictures of the tissues inside the body. Our medical staff regularly partner with our Radiology team to use ultrasound to evaluate and treat sports conditions, and now, Jones will bring that technology and care into the clinic for wider use and immediate accessibility.

After completing a full year of a sports medicine fellowship, Jones spent another year honing his skills in musculoskeletal ultrasound. With a real-time view of the bones and soft tissues, he can provide additional information without exposure to radiation, as with X-rays. In addition to providing images to help diagnose a condition, ultrasound can also be used to guide injections to make sure the medicine goes right where it is needed.

Jones has special training and extensive experience using ultrasound to evaluate injured joints, ligaments, tendons, muscles, and bones. Because many sport-related injuries cause discomfort with certain movements, the images are more helpful in diagnosing some conditions than X-rays. He is able to provide results immediately to patients and their families. Occasionally, further consultation with a Scottish Rite pediatric radiologist or additional imaging may be appropriate.

Conditions are Commonly Diagnosed with Musculoskeletal Ultrasound in Children and Young Athletes

  • Ligament sprains
  • Tendon injuries
  • Bursitis
  • Presence of foreign objects
  • Muscle strains
  • Trapped nerves
  • Some fractures

Learn more about pediatric sports medicine.