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Spina Bifida Won’t Slow Sophia Down!

Spina Bifida Won’t Slow Sophia Down!

by | Aug 16, 2024 | Pediatric Developmental Disabilities

“I am just like the other kids,” 11-year-old Sophia says. “I just walk and do some things differently!”

At 18 months old, Sophia was diagnosed with spina bifida. Spina bifida is a condition that occurs before birth when a child’s spinal cord is not properly formed. This condition affects other body systems, such as the bladder, bowel and mobility in Sophia’s case. “Hearing the diagnosis of spina bifida was like a gut punch,” Katherine, Sophia’s mom, said. “It was easy to feel alone and overwhelmed, but it doesn’t have to be like that.” They re-located to Dallas and discovered the resources and supportive care Scottish Rite for Children offered spina bifida patients. “After our first appointment here, I was in tears,” Katherine says. “Sophia and our family were finally getting the support we needed.”
                                                                               
Because of its complexity, spina bifida requires a collaborative care team to help each child’s individual needs. Since 2017, Sophia has experienced care from various experts in Physical and Occupational Therapy, Orthotics and Prosthetics, Urology and Neurosurgery. “I have nothing but praise for the staff here,” Katherine says. “They are always so helpful whether it was during appointments or returning phone calls.” Sophia doesn’t mind her longer appointments either. She is always looking forward to visiting her favorite Scottish Rite staff members, like physician Richard Adams M.D., or making time to have fun on the playground.
 
Sophia faces her condition with fearless determination. Before Sophia was born, there was a high possibility that she would be wheelchair-bound for her entire life. Now, Sophia is moving around with walking devices, learning new skills and adapting her condition to swimming, riding her hoverboard and cheerleading. “She has come a long way from where we started,” Katherine says. “It would be easy for her to settle, but she wants to feel like every other kid.” Since 2022, Sophia has attended Camp TLC. As a camper, she gets to explore new experiences and make friends with other children like her. It’s clear there is no obstacle that Sophia cannot overcome!

Thanks to the unwavering support from her care team and family, Sophia can navigate life with spina bifida confidently. Katherine urges other parents with similar challenges to ask plenty of questions and seek out connections. “I would be lost without the Facebook groups and the amazing parents we’ve met,” Katherine says. “Don’t isolate yourselves; this is a small but incredibly supportive community!”

Comprehensive Care With Every Step

Comprehensive Care With Every Step

by | May 1, 2024 | Pediatric Developmental Disabilities

Previously published in Rite Up, 2024 – Issue 1.

Three-year-old Marley, of Palmer, pulls up to her physical therapy appointment at Scottish Rite for Children in her self-propelled wheelchair, lovingly named Marley’s Moo. “Marley has never met a stranger,” says her mother, Christina. “Everyone becomes her friend, and her presence fills the room.”
 
When the family got the wheelchair, Christina decorated it like a cow to encourage Marley to use it. Now, she maneuvers easily, wherever she wants to go. When she is not in her wheelchair, she gets around by crawling, but in physical therapy, she is learning how to walk using a gait trainer — an assistive device similar to a walker.

Marley was born with myelomeningocele, a form of spina bifida in which a fluid-filled sac containing neural tissue protruded from her back because the neural tube in her spine did not close completely. When she was 2 days old, a surgeon closed her back, and at 2 months old, a specialist referred her to Scottish Rite for Children where she receives comprehensive care through the Spina Bifida clinic.
 
While spina bifida primarily affects the nervous system, it can also impact related body systems, such as bowel, bladder and mobility. Marley’s multidisciplinary team includes experts from Pediatric Developmental Disabilities, Orthopedics, Urology, and Physical and Occupational Therapy. “They see her from head to toe,” Christina says. “Scottish Rite has become our hub, and it’s convenient because they line up all of our appointments on one day.”

Spina bifida affects Marley’s mobility, causing developmental delay. She started crawling at age 2. Then, the family built parallel bars to help her learn to stand and walk. “She was doing great on that, but for some reason she did not want to be in her walker,” Christina says.

At Scottish Rite, physical therapist Meredith Porteous found creative ways to motivate Marley to use her gait trainer. She also recommended adjustments, providing armrest attachments to help keep Marley upright and more comfortable. “Meredith has been great with Marley,” Christina says. “She’s on her hands and knees right along with her, helping her. Marley has really come around and asks to be in her walker. It’s been a game changer.”

After moving forward in her gait trainer, Marley is learning how to turn. “Scottish Rite has been a guidepost for us every step of the way,” Christina says. “We’re really hopeful for Marley’s mobility journey. We’re ready to see her conquer the world.”

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.
Share Your Story: Personal Expression

Share Your Story: Personal Expression

by | May 26, 2023 | Pediatric Developmental Disabilities

Meet Rodrigo, a patient who is seen by our team of multidisciplinary experts. Learn more about his journey below.

Blog written by Rodrigo.

When I was a baby, my parents knew something was not right. According to my mom, I would push my hands against the wall just to stand up and move from one place to another. Also, I had problems sitting down. I would try to sit but would end up falling backward.

When I was about 1 year old, I was diagnosed with congenital muscular dystrophy and started going to see doctors at Scottish Rite for Children every six months. I have fond memories of that time in my life. I loved going there all the time and was always happy to miss school for these appointments. The inside of Scottish Rite does not look like a traditional health care institution, but rather felt like we were at a theme park.

I understood that I would eventually be too old to see doctors at a pediatric facility, and when I was about 20 years old, I had my last appointment. I cried as I was leaving that day.

Scottish Rite means so much to me, and I felt like I needed to give something back to the place that did so much for me. When I was 26 years old, I became a volunteer at Scottish Rite. Not only is it a place for children with special needs but also a place where children know that they are loved and accepted. It is also an amazing place for their parents! It is a place where families know that they are not alone and can find support.

I now have an art degree, and drawing and painting are my passions. I am very involved with the Muscular Dystrophy Association (MDA), and 15 months ago, I became an MDA Ambassador. I’ve even been able to use my talents to give back and have donated some of my paintings to be sold at the MDA Uncork A Cure Galas. I also enjoy making videos for social media where I paint and talk about what I’m painting.

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

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.

Get to Know our Staff: Veronica Meneses, M.D.

Get to Know our Staff: Veronica Meneses, M.D.

by | Nov 23, 2021 | Pediatric Developmental Disabilities

What is your job title/your role at Scottish Rite for Children?  
I am a developmental-behavioral pediatrician at Scottish Rite and direct the Developmental-Behavioral Clinic of the Pediatric Developmental Disabilities Department. Also, I care for children and adolescents in the Interdisciplinary Pediatric Spina Bifida Clinic. Another part of my job is being the program director for the University of Texas Southwestern/Scottish Rite for Children Developmental-Behavioral Pediatrics Fellowship.

Why did you want to become a doctor? Have you always wanted to work in pediatrics? 
I became drawn to being a doctor when I was about 15 years old. My parents subscribed to Maryknoll Magazine, and I was captivated by reading the stories of the medical service carried out by Catholic missionaries to people in need around the world. At the same time, I loved biology and decided that becoming a doctor would be the best way to combine my passion for helping other human beings with the study of science. I have always wanted to work in pediatrics!

What led you to Scottish Rite for Children? 
After completing medical school in New York City and residency and fellowships in Southern California, I conducted a national job search. I had an initial phone call with Dr. Richard Adams, and then visited Scottish Rite, which gave me the opportunity to meet him as well as his team and some of their patients. The comprehensive level of care they provided to children and families impressed me deeply. When something is “right” for me, I sense music around me. I felt like dancing from the very beginning and that melody has lasted for more than 10 years now.

What types of patients does your clinic see?
My clinic takes care of patients ranging from infants to young adults who have developmental and behavioral differences in addition to orthopedic conditions.

What are some of the common conditions seen in our PDD Clinics? 
Our Pediatric Developmental Disabilities Clinics see children and adolescents with diverse diagnoses, including cerebral palsy, myelomeningocele, autism spectrum disorder, intellectual disabilities, ADHD and genetic syndromes.

What makes our PDD Department unique?
Our department is unique in that it offers comprehensive, interdisciplinary care to children from infancy to young adulthood. We work as a team, and we collaborate with everyone who works at Scottish Rite for Children to best meet the needs of the children.

How do you help your patients feel comfortable and confident? 
I celebrate their strengths and the unique aspects of their personalities and their families. I share my knowledge with them and show them that I am human, too. I let them know that they and their families are experts about their conditions, as they are living with them 24 hours a day, 7 days a week. I invite them to teach me all that they know.

What is your favorite part of your job?
My favorite part of my job is meeting all the wonderful children, adolescents and their families and partnering with them to develop a long-term care plan that will help them reach their fullest potential. They are all different, and they all change me for the better.

What was your first job?
My first job was at Broadway, a Macy’s-like store, when I turned 16. I worked in the gift-wrapping department and really enjoyed helping to make people’s gifts look beautiful.

Tell us something that might surprise us about you:
It might surprise you that I have a true love for art history and can spend hours in museums.

What is your favorite thing to do when you’re not working?
When I am not working, I am happiest spending time with my family and pets, reading, looking at art and taking long, meditative walks.