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Lexie’s Journey of Unbreakable Bonds and Unstoppable Dreams

Lexie’s Journey of Unbreakable Bonds and Unstoppable Dreams

by | Dec 19, 2024 | Rheumatology, Scoliosis & Spine

At Scottish Rite for Children, every patient’s journey is as unique as they are. Each experience, story and moment shared at Scottish Rite creates an unbreakable bond between the patient and their clinical team. It’s not just about delivering world-class care — it’s about being a vital part of offering children hope that extends far beyond treatment.

21-year-old Lexie spent much of her youth receiving care from a multidisciplinary team of experts at Scottish Rite. At age 13, Lexie was diagnosed by an outside provider with oligoarticular juvenile idiopathic arthritis (JIA), a common condition that causes joint swelling, stiffness and limited movement in children. Oligoarticular JIA affects four joints or less, and, for Lexie, her pain was in her left knee.

Lexie came to Scottish Rite at age 16 to see pediatric rheumatologist Julie M. Fuller, M.D., to alleviate her knee pain. After prescribing her the necessary medication, Lexie saw a major improvement to her once debilitating pain.

“My family had just moved to Oklahoma where there were no pediatric rheumatologists in the area,” says Lexie. “Dr. Fuller was highly recommended by other doctors in the area, and the care I received with Dr. Fuller’s team was unmatched.”

As she began preparing to go to college at Oklahoma State University, Lexie’s routine wellness exam resulted in a diagnosis of scoliosis and put a halt to her daily life.

“To be completely honest, this was a terrifying time in my life of not knowing what the next day would hold in regard to my health,” Lexie says. “I had big aspirations of graduating college with honors and applying to law school, but those dreams were threatened. I just decided to put my health in Dr. Sucato’s hands, and that turned out to be one of the best choices I ever made.”

Chief of Staff Daniel J. Sucato, M.D., M.S., prepared Lexie for surgery to correct the curve in her spine. Together, they coordinated the best time to schedule surgery, with an effort to minimize any disruptions to her school year. Though the recovery process was challenging, Lexie shares that her clinical team made an everlasting impact.

“The team was fully transparent with me and walked me through every step of my journey,” Lexie says. “They have prayed with me, learned my story and inspired me in more ways than they could possibly imagine. The people at Scottish Rite genuinely care.”

After her treatment, Lexie is focusing on a new chapter in her life. This December, she will graduate summa cum laude from Oklahoma State University and will begin applying to law schools. She also shined as her university’s homecoming queen this year.

“Being surrounded by such a positive care team that cheered me on throughout my journey was such a blessing,” Lexie says. “There’s not a day that goes by where I don’t think about my time at Scottish Rite. Dr. Sucato’s team not only changed my life, but they gave me the chance to go out and live one.”

Diagnosis to Dedication: How Aaliyah’s Scoliosis Journey Inspires Change

Diagnosis to Dedication: How Aaliyah’s Scoliosis Journey Inspires Change

by | Aug 14, 2024 | Scoliosis & Spine

18-year-old Aaliyah, of Kress, is transforming her personal journey with scoliosis into a source of inspiration for young girls with similar diagnoses. “Scottish Rite means so much to me by helping me find my passion in changing lives,” Aaliyah says. She shares her transformative care she received, hoping to make a scoliosis diagnosis less intimidating to patients.

Aaliyah was diagnosed with juvenile idiopathic scoliosis (JIS) after her routine physical at age 9. Her family faced a difficult decision: undergo spinal fusion surgery or risk losing Aaliyah’s ability to walk. Determined to find another way, Aaliyah chose to wear a spinal brace for 22 hours a day over a span of seven years. In 2021, Aaliyah’s back pain progressed, and she started treatment with pediatric orthopedic surgeon Dr. Jaysson T. Brooks. “After that visit, Dr. Brooks changed my life,” Aaliyah says. Instead of recommending surgery, Brooks suggested physical therapy as the best approach for her.

The treatment Aaliyah received at Scottish Rite fueled her passion for scoliosis awareness. Before she met Brooks, she was a member of the nonprofit organization Family, Career and Community Leaders of America (FFCLA). FCCLA offers programs, contests, scholarships and opportunities for member to develop skills needed for college and careers. Aaliyah’s experience inspired her project titled “The Journey.” This project explores her personal journey with scoliosis and the impact it had on her and her family’s lives. “The Journey” eventually placed in 5th place at FFCLA’s National Leadership Conference. Top of Form

Now, she is a prominent spokesperson for scoliosis in her community. In 2022, Aaliyah launched a scoliosis research fundraiser titled “The Outreach” for Setting Scoliosis Straight Foundation, a nonprofit devoted to empowering families impacted by scoliosis through education, connection and research. Her efforts caught the attention of mayor Johnny Taylor, who honored her dedication by declaring December 20th as both National Scoliosis Awareness Day and Aaliyah Wallace Day in her hometown.

There is no limit to the success Aaliyah will achieve! Her latest project, “My Testimony,” is a book series featuring characters LeeLee, inspired by Aaliyah, and Lillian as they embark on their journey of overcoming scoliosis. To launch the series, she organized a block party in Kress, with all proceeds going to funding the publication and illustration of the books. “I went from a scared 9-year-old to making a difference and changing lives with my story,” Aaliyah says. “I can’t thank Scottish Rite enough for changing my life!” Now, Aaliyah is attending her first year at Texas Tech University as a Pre-Medicine major. She was a recipient of our Legacy Scholarship, and we cannot be prouder of her!

Share Your Story: Lifelong Commitment to Care

Share Your Story: Lifelong Commitment to Care

by | Aug 5, 2024 | Scoliosis & Spine

13-year-old Lyla and her mom Ashley have more in common than they originally thought. Ashley was diagnosed with scoliosis in 2000 after her mom noticed a spinal curve while she tried on clothes. A chiropractor referred her to Scottish Rite for Children to begin treatment. It was the attentive care and support from chief of staff Daniel J. Sucato, M.D., M.S. and her child life specialist that influenced Ashley’s pursuit for a degree in Child Development and Family Studies from the University of North Texas.

In 2020, Lyla embarked on her own scoliosis journey with Scottish Rite at age 9. With a mother’s eyes, Ashley first noticed Lyla’s shoulder blades were uneven. They visited their primary care physician, who referred them to Scottish Rite. Lyla’s scoliosis was juvenile idiopathic scoliosis, known as the most common type of scoliosis.
The uncertainty of Lyla’s diagnosis disappeared when Ashley and her husband Chad discovered that Sucato would be treating their daughter. “My heart sank because I knew what it meant to have scoliosis,” Ashley says. “However, Dr. Sucato has the kind of heart needed to serve and advance orthopedic care for children.” Lyla’s scoliosis was treated mostly with a back brace for two years. She underwent spinal fusion surgery in 2023 and is now free from back pain!

Research proves that scoliosis has a genetic component and tends to run in families. Children with a family history of scoliosis, like Lyla, are more at risk. This is predominately seen in girls that range from ages 10 to 15.

Ashley and Lyla’s bond is stronger than ever. Lyla is like her mom in many ways, outside of sharing a diagnosis of scoliosis. They are both passionate about helping others, and Lyla is set on going to college to become a child life specialist at Scottish Rite. “Scottish Rite helps children improve their quality of life,” Ashley says. “Most importantly, Scottish Rite creates life-long memories and shows us how we are supposed to love and help others.” Lyla is incredibly active now and enjoys many hobbies like acting, reading, dancing, singing, being with her friends and serving at church! Lyla and Ashley’s diagnosis and care mirror each other, reflecting the need for the accessible expert care Scottish Rite provides.

Standing Tall After Spinal Fusion Surgery

Standing Tall After Spinal Fusion Surgery

by | Jun 27, 2024 | Scoliosis & Spine

Previously published in Rite Up, 2024 – Issue 2.

In January of 2023, Delilah, a 12-year-old from San Antonio, was helping her mother, Angie, clean the house. As Delilah bent over to pick up something off the floor, Angie noticed that her backbone protruded from her back at an abnormal angle. “It caught me off guard,” Angie says. She called her husband into the room and asked Delilah to repeat the movement. He looked at Angie with wide eyes and said, “What was that?”

Delilah’s pediatrician suspected scoliosis and referred the family to an orthopedic physician.

“After taking an X-ray, he gave us the news that her spine was at an 84 degree angle,” Angie says. “Delilah and I had tears in our eyes.” Angie explained that because of the curves magnitude, the physician said that he would feel more comfortable recommending them to Scottish Rite for Children. “We had never heard of Scottish Rite, but it was the best advice and decision we ever made,” Angie says.

At Scottish Rite, pediatric orthopedic surgeon Megan E Johnson, M.D., diagnosed Delilah with adolescent idiopathic scoliosis, of which there is no known cause. Because her curve had surpassed the surgical magnitude of 50 degrees, Dr. Johnson recommended posterior spinal fusion, a surgery in which a rod is secured to the vertebrae to straighten the spine and hold the correction of the curve in place.

“Scoliosis progresses more rapidly when kids are undergoing their big growth spurt,” Dr. Johnson says.

“Delilah still had a lot of growth left, so she was at a greater risk of progression.”

Before surgery, Delilah asked thoughtful questions and expressed some worries. “I had a fear of like, what if I wake up during surgery?” she says. “And, what if it doesn’t turn out right, or what if they miss something?” Dr. Johnson marveled at Delilah’s maturity. “For being 11 at the time, Delilah asked great questions, advocated for herself and did her own research,” she says.

In October, the family traveled to Dallas for Delilah’s surgery and stayed at the Ronald McDonald House of Dallas, Scottish Rite’s community partner. “They took such good care of my family,” Angie says. “I’m very grateful for that.” After a successful surgery, Delilah’s curve was corrected from 95 to 20 degrees. She also got two inches taller. “Delilah exceeded our expectations,” Dr. Johnson says. “She has been a champ through it all.” Six months later, Angie cannot believe that Delilah had spinal surgery. “It boggles the mind because she’s back to being herself,” she says. “For us, Scottish Rite means hope, that everything is going to be OK.” Delilah agrees. “You can trust Scottish Rite,” she says, “and know that you are in great hands.”

Read the full issue.

Scoliosis Awareness Month: Wearing Your Scoliosis Brace

Scoliosis Awareness Month: Wearing Your Scoliosis Brace

by | Jun 21, 2024 | Scoliosis & Spine

At Scottish Rite for Children, our spine experts care for the common to the complex of scoliosis curves. The type of treatment required for the condition depends on the child, when they were diagnosed and the severity of the curve.

One treatment option for scoliosis is bracing. At Scottish Rite, our in-house Orthotics department creates custom braces – making sure it fits the child just right. Here are a few basics to know about the scoliosis brace:

  • The purpose of a brace is to help stop the curve from getting worse with a goal of preventing the patient from needing surgery.
  • Although it does not cure the condition, if used on a curve that ranges from 25 to 40 degrees and the child is still growing, it can be extremely effective.
  • Your doctor will determine the number of hours the brace should be worn throughout the day.
  • If the brace is uncomfortable, our team works with the patient to make adjustments as needed throughout treatment.

Different Types of Braces:

  • TLSO (thoracolumbosacral orthosis) – used for curves located in the mid to lower part of the back
  • Providence Brace– also known as the nighttime brace, used for curves that are less severe.

Being Active While Wearing Your Brace:

  • Our team encourages a child who must wear a brace to continue with their sport and/or activity.
  • Bracing for this condition is only temporary, and although adjustments might need to be made to make the brace more comfortable, etc., it is created to fit the child so they can continue being active.

Taking Care of Your Skin
The brace pushes firmly on your body and will cause redness of your skin. Over time the skin in the pressure areas may become darkened and tougher. These changes are temporary and may improve brace comfort. If you develop a sore, your brace needs adjustment.

Clothing Suggestions

  • We recommend you wear a form fitting tank top under the brace. It is more comfortable when there is something between you and the brace.
  • Loose-fitting clothing will hide the brace better than form-fitting clothing.
  • Bras without underwire may be more comfortable.
  • To make using the bathroom easier while wearing the brace, wear your underwear over the brace.

Taking Care of the Brace
To help prevent skin irritation, the inside of the brace must be cleaned at least once a week, or more often as needed. Use a cloth to wipe the brace clean using soap and water or rubbing alcohol.

Learn more about scoliosis bracing.

Scoliosis Awareness Month: What is Scoliosis?

Scoliosis Awareness Month: What is Scoliosis?

by | Jun 11, 2024 | Scoliosis & Spine

What is it?
Scoliosis is not a disease. It is an abnormal curvature of the spine. In addition to the spine curving sideways, it also twists, making the ribs (which are attached to the spine) look uneven. This may cause a prominence or a “bump” on the back. Other signs include a shoulder or hip that looks higher than the other or the chest may appear uneven. Scoliosis is usually a painless condition. Children with scoliosis are no more likely than kids without scoliosis to have back pain.

The diagnosis of scoliosis is confirmed by taking an X‐ray of the spine. If a curve measures more than 10 degrees, it is called scoliosis.

Who has it?
Scoliosis usually occurs in early adolescence and becomes more noticeable during a growth spurt. Approximately 0.5 percent of young people develop scoliosis that requires treatment. Girls have scoliosis eight times more often than boys. Sometimes scoliosis can be found in several family members, for several generations.

Why does it happen?
There are several different types of scoliosis that affect children.

Idiopathic Scoliosis
The most common type of scoliosis is idiopathic, which means the exact cause is not known. Idiopathic scoliosis can occur in infants, toddlers and young children, but the majority of cases occur from age 10 to the time a child is fully grown. Scoliosis tends to run in families. It is not a disease that is caught from someone else like a cold. There is nothing you could have done to prevent it. It is not caused by carrying heavy books, backpacks or purses, slouching, sleeping wrong or from a lack of calcium.

Congenital scoliosis
Congenital means that you are born with the condition. Congenital scoliosis starts at the spine forms very early in pregnancy. Part of one or more of the vertebra does not form completely, or the vertebra does not separate properly. Other abnormalities may also be present such as ribs may be missing or there can be ribs that are fused together. This type of scoliosis can be associated with other health issues including heart and kidney problems.

Neuromuscular scoliosis
Any medical condition that affects the muscles and the nerves can lead to scoliosis and this is known as neuromuscular scoliosis. This is most commonly due to muscle imbalance and/or weakness. Examples of neuromuscular conditions that can lead to scoliosis include cerebral palsy, spina bifida and muscular dystrophy.

How is it found?
Finding scoliosis is easy when the back is examined closely but it can be missed if someone isn’t looking for it. Parents or friends might notice the curve, but most curves are found through a school screening program or by a pediatrician. A trained examiner can detect even a slight curve when a person bends over to touch her or his toes. If a curve is suspected, a referral is often made to an orthopedic doctor. Print this PDF.

What may be noticed on someone who has scoliosis:

  1. One shoulder may be higher than the other.
  2. One scapula (shoulder blade) may be higher or more prominent than the other.
  3. When the arms hang loosely at the side of the body, there may be more space between the arm and the body on one side.
  4. One hip may appear to be higher than the other.
  5. The head may not be centered exactly over the pelvis.
  6. The waist may be flattened on one side; skin creases may be present on one side of the waist.

What are the types of curves?
Curves occur in the spine between the neck and the pelvis. They are named depending on their location. The most common type is in the upper back (thoracic) and tends to curve to the right. Other curves are in the lower (lumbar) spine. Many children have both types of curves.

How are curves treated?
Treatment depends on how big the curve is when it’s detected and how much growth is left. Curves can worsen during the major growth spurts. Curves less than 20 degrees may not need any treatment except to be checked by the doctor from time to time until the child has stopped growing.

If a child is still growing and the curve is greater than 20 degrees, the doctor might recommend wearing a brace. Bracing will not correct a curve. The goal of bracing is to help prevent the curve from getting worse during growth. Braces must be worn as prescribed by the doctor during the growing years in order to be effective. After growth is completed or if the curve does not respond to bracing, the brace is no longer worn.

If a curve is advanced, the doctor may suggest an operation to correct the scoliosis. Allowing a large curve to progress could interfere with heart and lung function in later years. The most common type of operation is called posterior spinal instrumentation and fusion. Instrumentation refers to metal rods and screws that are attached to the spine to hold it in the corrected position. Fusion refers to the bone graft that is placed along the spine making the vertebrae one solid piece.

Learn more about the importance of scoliosis screening.