Cerebral Palsy Clinic: Your Child’s Care and What To Expect

Cerebral Palsy Clinic: Your Child’s Care and What To Expect

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: Oh, the Places You’ll Go!

Share Your Story: Oh, the Places You’ll Go!

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

Blogs written by Beau and his mom, Courtney.

When Beau was 6 months old, he was placed in the Chinese orphanage system, and our family adopted him in 2017, when he was 4 years old. We did not know much about his history, as he lived in a very large orphanage and information was not passed along. We did know he would be somewhat of a medical mystery and booked his appointment with our pediatrician before we even left China.

Beau is a complex patient, and after a variety of appointments and tests, he was eventually diagnosed with a form of dwarfism called spondyloepiphyseal dysplasia congenita (SEDc) and a monoallelic mutation of COL2A1 gene. This is a rare genetic disorder that impacts different parts and systems of his body, including his eyes, hearing, spine and more.

In May 2021, Beau’s spinal curve rapidly started to increase, and that is when our orthopedic surgeon in Houston referred us to Scottish Rite for Children. We really love and trust our doctor in Houston, so it was very comforting to hear him say, ‘If my kid needed this done, where I’m sending you is where I would go. They are my number one choice.’ My anxiety as a mom went away, and I immediately started to research everything I could. We took the first available appointment and met Dr. Johnson for the first time at the end of June. She gave us a game plan for surgery, and we left with a sense of peace about the journey we were about to take with Beau at Scottish Rite.

In January 2022, Beau had spinal surgery and was in halo decompression for the next five weeks. Halo-gravity traction is the process of using a metal ring, or halo, attached to a child’s skull that applies traction to the spine, gently stretching and straightening out the spine to correct curvatures. – Courtney

I had so much fun in my halo, and my mom decorated my equipment, which made it even more fun! My walker was Mardi Gras-themed the entire time. I always had beads to hand out, and sometimes I even had a speaker playing Mardi Gras music!

My wheelchair was first decorated as the emperor’s throne, because of Chinese New Year, and I handed out handmade fortune cookies. I created all the sayings, and my mom made paper cookies. I even painted my face like a tiger, because we are in The Year of the Tiger.

For Valentine’s Day, my decorations were full of hearts, lights and sparkles. I had a cool shirt that said, ‘Just call me Cupid’ and wore an awesome red top hat with heart glasses. My mom and I made over 350 valentines, and we handed them out around the hospital. I know that there are a lot of people that are needed to make hospitals run smoothly, and I tried to meet all of them. I wanted to remind them that they are important, and I was thankful for all they did during my stay.

After surgery, I went home in a wheelchair. My farewell theme decorations were Oh, the Places You’ll Go! My mom said that this was a perfect theme to represent moving from China to the United States. Not only did I have to learn and adapt to a new world, but because of my spine surgery at Scottish Rite, I also have a new level of life, and nothing is going to hold me back!

I feel like I will be able to do anything I set my sights on, thanks to different people at Scottish Rite. The Therapeutic Recreation department allowed me to participate in sports and games that I never thought I would be able to do. My size can make sports hard, but they showed me how I could fully participate with just minor modifications.

When I was an inpatient, Ms. Dana gave me my very own Learn to Golf set of golf clubs, and we had a special visitor during therapeutic recreation – Mr. Carlos. He taught me how to play golf, plus he had a huge smile, was super nice, and has a special leg. We live near a golf course, and I have always wanted to learn how to play, but because of my size and my back, I never thought I would be able to participate. Mr. Carlos worked with me, and I learned how to make adjustments and was able to swing a golf club and hit the ball. After my big surgery, he even came to check on me. Learn to Golf will allow me to keep playing the sport and has connected me with special coaches, just like Mr. Carlos.

I am now back home in Houston and feeling good. I will always remember Scottish Rite for Children, and I look forward to my checkups because I can visit my friends all around the hospital, and they always remember my name!! – Beau

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

Get to Know our Staff: Dana Dempsey, Therapeutic Recreation

Get to Know our Staff: Dana Dempsey, Therapeutic Recreation

What is your job title/your role at Scottish Rite for Children?  
As director of the Therapeutic Recreation department, I make sure my team has the resources and support they need to provide therapeutic recreation services to our patients. Therapeutic recreation services include inpatient interventions, outpatient interventions and community outreach programs, such as camps, All-Star Tennis and the Learn to Golf program. I also provide direct patient care when my teammates are occupied with other patients.

What do you do on a daily basis or what sort of duties do you have at work?  
Each day is a little different, depending on variables like how many inpatients are in the unit, clinic schedules, project meetings and preparations for community outreach programs. On a typical day, I can find myself meeting with a patient and parent in the clinic, prepping for camps or pulling golf clubs and confirming instructors for Learn to Golf clinics.

What was your first job? What path did you take to get here or what led you to Scottish Rite? How long have you worked here?
My first job at Scottish Rite for Children was as the Therapeutic Recreation Coordinator. In 1997, Scottish Rite opened the Jas. F. Chambers Jr. Youth Fitness Park, and I had the privilege of using that park as a tool. At the time, we didn’t have a therapeutic recreation department. I’ve been blessed to be surrounded by wonderful colleagues while developing therapeutic recreation programs that provide a variety of services for our patients. Prior to coming to Scottish Rite, I provided therapeutic recreation services in mental health settings for about 10 years. This October, I celebrate 25 years at Scottish Rite.

What do you enjoy most about Scottish Rite?
“Our patients” is the easiest answer. But beyond the patients, I’ve developed some close friendships with other staff members that bring amazing joy to my life. People – they are important. At Scottish Rite, that message comes through.

Tell us something about your job that others might not already know. 
Although I run a junior golf program for our patients and approximately 50% of my job is devoted to Learn to Golf, I’m lucky if I get to play golf three to four times a year! Most folks think I play golf all the time. 

Where is the most interesting place you’ve been?
I find most places I go very interesting. It’s a toss-up between Addo Elephant Park in South Africa or sailing in the British Virgin Islands. However, I find that my own backyard is really interesting, too!

What is your favorite game or sport to watch and play?
I’m not much of a spectator. I love to play golf!

What’s one fun fact about yourself? 
I’ll get to be a part of history because I am going to be at the inaugural U.S. Adaptive Open in Pinehurst on July 18 – 20, 2022. Because of the Learn to Golf program, I’ve become friends with several adaptive golfers who are in the Championship Field.

The Human Side of Health Care

The Human Side of Health Care

Over the past few months, members from our team have been invited as guests on The Human Side of Health Care – a weekly radio program hosted by the DFW Hospital Council that broadcasts on KRLD 1080 AM. 

Below are the topics discussed.

The Human Side of Health Care
Former Administrative Director of the Luke Waites Center for Dyslexia & Learning Disorders – Gladys Kolenovsky
This segment provides details about Scottish Rite for Children’s Luke Waites Center for Dyslexia & Learning Disorders – the history of the program, defining dyslexia and sharing the impact Scottish Rite’s team has had on children diagnosed with this condition over the years. 
Listen to the full episode.

The Human Side of Health Care
Director of Therapeutic Recreation – Dana Dempsey 
This segment gives an overview of Scottish Rite for Children’s Therapeutic Recreation department – how this team impacts our patient population by helping children with a disability or chronic medical condition to learn the skills they need to be involved in leisure activities and recreation. 
Listen to the full episode.

The Human Side of Health Care
Director of Patient Experience – Ashleigh Kinney 
In this segment, Scottish Rite for Children’s Director of Patient Experience Ashleigh Kinney, explains the importance of unconditional positive regard and how it is implemented throughout the organization.
Listen to the full episode.

Share Your Story: Hole in One

Share Your Story: Hole in One

Meet Phoebe, a patient seen by our spine experts. Learn more about her journey below.

Blog written by Phoebe’s mom, Victoria of Rockwall, TX.

When Phoebe was in sixth grade, she had her annual pediatrician visit and that was when our doctor first recommended further evaluation of her back. Phoebe’s shoulders were uneven, and she appeared to have an abnormal spinal curve. Our pediatrician recommended that we go to Scottish Rite for Children.

Phoebe became Dr. McIntosh’s patient and due to the degree of curvature in Phoebe’s spine, a scoliosis back brace was highly recommended and necessary to stop the progression of the curve. As a mother of a beautiful, young and active daughter, the news was a hard pill to swallow. We were very nervous and afraid of how the brace was going to impact our daughter’s lifestyle. Dr. McIntosh was very understanding and thorough, answered all our questions and made us, especially Phoebe, feel comfortable.

Dr. McIntosh is an expert and we felt confident that our daughter was in great hands.

That same day, we met with Kelsey in the Prosthetics department. She took measurements and designed Phoebe’s back brace. Phoebe loved all the staff and doctors but felt a special connection with Kelsey. She was funny, young at heart and spent a lot of time with Phoebe during the brace adjustments.

At that time, Phoebe was 11 years old and about to transition from elementary to middle school. It was hard to see her wear a thick plastic brace during the hot 100+ degree weather. Phoebe has always been tough, and she rarely complained. She didn’t like the brace, but she knew that it was the only option to stop the curvature progression. Many times, she would even wear it for more than the 20 hours a day that was recommended. She started with a 19-degree curvature and at the end of the process, she was at a 17-degree curvature, which was great.

As a family, we did different activities together and allowed Phoebe to try many different sports. Phoebe was able to play soccer and basketball, run track, and even participated in cheerleading – all throughout her bracing process. Dana Dempsey, the Scottish Rite Director of Therapeutic Recreation, invited us to participate in a Learn to Golf clinic. It was at this clinic when Phoebe decided to try golf and she fell in love with the sport! Through the years, she has participated in several different Learn to Golf clinics and is now on the varsity golf team at her high school. She even made the varsity team as a freshman!

We are beyond grateful for all of the staff and volunteers at Scottish Rite. Phoebe’s scoliosis experience was much brighter due to the care and love she felt, and we strongly recommend Scottish Rite to anyone else that may be going down this path.

Learn more about Phoebe’s Story and see how Learn to Golf changed her life. Click here.

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