Miles of Motivation: Alice Races Ahead of AMPS

Miles of Motivation: Alice Races Ahead of AMPS

12-year-old Alice is racing towards her dreams, confidently managing each day and creating her own path! With a passion for running, she participates in cross country for her school and the Amateur Athletic Union (AAU). After securing fifth place in AAU’s 5K, Alice began experiencing knee pain, which worsened following an injury during P.E. class in 2022. Despite physical therapy and using crutches, her condition didn’t improve. Alice had moments of extreme pain that prevented her from even walking. Unable to find a solution, Alice’s mom, Lindsey, sought help from Scottish Rite for Children in May 2023.

Sports medicine physician Jacob C. Jones, M.D., RMSK diagnosed Alice with amplified musculoskeletal pain syndrome (AMPS). Defined by Psychology fellow Diana Tinsley, Ph.D., AMPS is a chronic pain condition that causes prolonged pain, even though there is no identifiable pain source. “The pain sometimes starts with an injury,” Dr. Tinsley says. “Even though the physical injury heals, the pain persists and can spread throughout the body or even worsen in severity.”

Her condition required a multidisciplinary team of experts in sports medicine, physical therapy and psychology to reintroduce her to her love for running. Lindsey says Dr. Tinsley and physical therapist Ashley Ratliff were key motivators throughout Alice’s care journey. “There were many tears and ‘What if?’ moments during Alice’s treatment,” Lindsey says. “It’s important to truly lean on your care team and follow through with the work they give you to do at home – no matter how hard it may be!”

Alice’s Scottish Rite team worked to create a comprehensive treatment approach that set her transformation into motion. Her goal was to learn how to move through the pain and get back to daily life. Dr. Tinsley provided Alice psychological support through pain management strategies and helped her set manageable goals to work into her day-to-day schedule, such as leaving her crutch at home when doing errands. Soon, Alice went from relying on crutches to walking without assistance altogether. “Her pain had taken over her life,” Dr. Tinsley says. “Pain flares can happen especially when stress increases. We try to put her immense progress into perspective and continue to encourage her.”

Physical therapy for Alice was trickier, as there was no clinical evidence of her injury. However, Ashley’s exercises focused on desensitizing Alice’s knee to decrease the pain signals to her brain and improve Alice’s knee function. Similar to Dr. Tinsley’s approach, Ashley slowly decreased Alice’s use of crutches to help her regain muscle in her knee from not bearing weight on it. “The focus was on making small goals at a time to gradually work to her overall goal of running again,” Ashley says. “This involved a lot of communication between Alice and I to ensure she was being challenged, but also that she had appropriate time to cope and work through new challenges.”

Since Alice was a competitive runner, they alternated between gym sessions and aquatic therapy to improve her pain tolerance for her running return. Alice’s care journey continued at home, with her Scottish Rite care team and family collaborating to decrease her fear of movement. “Alice had such success based on her participation with Dr. Tinsley and being diligent with her physical therapy exercises at home,” Ashley says. “Patients with AMPS need support at home to encourage their progress.” Alice slowly transitioned from running in the pool to the treadmill, eventually running 6 miles without discomfort. Due to her dedication to her passion, Alice made excellent progress and was discharged from physical therapy!

Alice

Inspired by her care, Alice is now encouraging other kids with similar diagnoses. She has published a journal titled “Today is My Day!”, a mindfulness journal dedicated to those who have anxiety or depression. It encourages self-reflection with the goal of taking steps to appreciate life more. Additionally, Alice safely returned to cross country and is continuing to build her strength to achieve her dream of being a professional runner! Her success is a testimony of the support from her Scottish Rite care team and family. “From the smiles we get from the front desk to excellent care, our overall experience has been amazing,” Lindsey says. “Without Scottish Rite, Alice would not be where she is today and doing what she loves!”

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Get to Know Our Staff: Dan Surgenor, Prosthetics and Orthotics

Get to Know Our Staff: Dan Surgenor, Prosthetics and Orthotics

What is your job title/your role at Scottish Rite?
My role at Scottish Rite is to fabricate orthotic and prosthetic devices.

What is the most fulfilling part of your job?
The most fulfilling part of my job is the impact that we make on children and their family’s lives.

What makes Scottish Rite a special place to you?
The feeling of being part of a team is what makes Scottish Rite a special place to me.

What made you choose a career in health care?
My dad lost his leg and going with him to his appointments made me realize that this is what I wanted to do as a career.

What is something unique you get to do in your position?
We are always learning new techniques.

What’s your favorite thing to do outside of work?
I enjoy working on old trucks like my 1955 Chevy pickup truck.

Do you have any hidden talents?
I just passed my real estate exams, and I look forward to helping my wife on the weekends.

Where are you from and what brought you to DFW?
I am originally from the Pittsburg area. When Scottish Rite hired me, I relocated to Texas.

If you could travel to anywhere in the world, where would you go and why?
I would go anywhere in an RV with my wife and dogs. We could road trip across America!

 If you had to pick one meal to eat for the rest of your life, what would it be and why?
If I had to pick one meal to eat for the rest of my life, it would be whatever my wife is cooking because it is fantastic.

What movie do you think everyone should watch at least once?
The NeverEnding Story.

What was the first concert you attended?
My first concert I attended was Hank William Jr.

Favorite DFW hidden gem?
My favorite hidden gem is my 2,400 sq. ft. shop called The Bent Push Rod Garage.

If you were to have a movie based on your life, which actress/actor would you choose to play your character?
I would choose Timothy Olyphant, who played Raylan Givens in the TV show Justified.

What is some advice you would give your younger self OR what’s the best piece of advice you’ve received?
Enjoy every day because time goes by fast. This too will pass, even the good and the bad.

 

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!

 

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