A Parent’s and Patient’s Perspective on Scoliosis – Allison’s Amazing Journey

A Parent’s and Patient’s Perspective on Scoliosis – Allison’s Amazing Journey

Lisa, mom of Allison, shares what it was like for her daughter Allison to be treated at Scottish for Children for scoliosis:
 
What brought you guys to Scottish Rite?
Allison was 8 years old when we went to her pediatrician for back pain she had recently been experiencing. At her appointment, the doctor noticed a curve in her spine and diagnosed her with scoliosis. After confirming her condition with an X-ray, Allison was referred to Scottish Rite for Children by her doctor. We were also told by others to go to Scottish Rite for the best care possible. From the moment we walked in the front doors, the sense of peace we felt was so overwhelming. We knew our decision to come to Scottish Rite was the right one!
 
What was your experience like with Dr. Ramo and the Scottish Rite staff?
The compassion Dr. Ramo, his nurse Marivel and his entire team showed us is something we will never forget. As parents who were very concerned about this diagnosis, Dr. Ramo explained everything thoroughly. He answered all our questions and addressed our concerns, which made us feel very confident in the treatment and surgery plan for Allison. With her very young age and significant curve, her treatment plan was to insert MAGEC® growing rods which would be lengthened every six months to allow for more growth before her spinal fusion. With Dr. Ramo’s expertise and knowledge, we knew we would get through this.

Do you have any advice for parents whose children have recently been diagnosed with scoliosis? 
Remember that as worried as you might be for your child, your child is scared and worried, too. Encourage them to write down or ask questions they may have about their treatment plan and surgery. Dr. Ramo would always ask Allison if she had any questions for him. He would answer every question looking directly at her, so she understood. Him taking the extra time to do all of this made her feel better and settled her fears. 
 
What’s it like to see Allison where she is today? 
Seeing Allison where she is today fills us with such gratitude. The doctors at Scottish Rite are unmatched in their skills. God has given them their knowledge and expertise in their chosen field and helps them perform miracles every day. We feel blessed to have been a part of these miracles. 

What do you want people to know about Allison’s accomplishments?
We are so proud of Allison’s accomplishments. She has been on the honor roll since she first started school. She recently graduated high school as a member of the National Honor Society, AP Ambassadors, and she was enrolled in Dual Credit and On Ramps classes. Because of her high academic achievement, she has qualified for automatic acceptance to the University of Texas at Austin and Texas A & M. She has also been accepted to SMU, UNT, Baylor and TCU. She recently made her decision to commit to TCU to further her academic career by majoring in marketing. She is excited to experience college life living in the dorm and meeting new friends. 
We are also proud of her involvement with the Peer Support program at Scottish Rite. She has talked on the phone and on FaceTime with other patients – walking them through the process of scoliosis surgery. She has said, “If I can help someone else by answering their questions in hopes of making them feel better and easing their fears, than every minute I’m on the phone with them is worth it. Hopefully, they can see and hear that I did it, and they can too!”
 
Is there anything you want to say to Dr. Ramo and his team?
We are eternally grateful to Dr. Ramo and his team. They are like family to us. We recently returned to Scottish Rite to see Dr. Ramo for her final follow up. Walking through those doors again felt like coming home! Marivel changed her schedule to be there when we came just so she could see Allison and catch up on her progress! What a great visit we all had! Scottish Rite will always hold a special place in our hearts! 
 
Allison, a former patient treated by Brandon A. Ramo, M.D., for scoliosis, shares her experience at Scottish Rite and what other kids should know:
 
Tell us about your journey with scoliosis and Scottish Rite for Children.
My journey with scoliosis and Scottish Rite for Children started when I was in second grade after I began to experience severe back pain. Even though I was very young, I knew that something was wrong. My parents took me to Scottish Rite, and I had growing rods put in to straighten my spine. About every six months, I would have my growing rods lengthened as my torso grew. When I was in fourth grade, I had my final spinal fusion. In the beginning, I was very scared about my situation since there were so many uncertainties. Scottish Rite for Children helped me tremendously through everything by having phenomenal staff who supported me through my journey. I felt comfortable throughout the entire process, which made my journey a lot easier and helped me through my fears. 
 
What would you tell other kids about Scottish Rite?
I would tell other kids that Scottish Rite is the best hospital and has some of the best people you will ever meet. No matter what you are going through, they will be there to support you in any way possible and help you have an easier experience. There are fun things to do that give you things to look forward to when you go. You will meet staff who are the most compassionate and caring people you have ever met. Overall, Scottish Rite is an amazing place with outstanding people and resources. 
 
What is your advice to other kids who have been diagnosed with scoliosis?
I would advise other kids who have been diagnosed with scoliosis to not be afraid. I was very afraid when I was first diagnosed, but my fears were eased when I realized what amazing people would be taking care of me and helping me through my situation. It may seem scary at first, but trust me, it will become a lot less scary. Remember that you have people supporting you and wishing the best for you! 
 
What is your favorite thing about or favorite memory of Scottish Rite?
One of my favorite things about Scottish Rite was the dogs that visit you every week in the Inpatient Unit. I can remember how excited I was to pet the dogs, especially since I never had a dog. I was amazed that the dogs were so intelligent. Many of them knew all kinds of tricks, and one of them could even tell you it’s age. This was a memorable experience for me since I was really scared of having surgery, and having the dogs visit me helped me calm down and feel better about the situation. 
 
What are your plans after high school graduation?
After high school graduation, I am going to be attending college at TCU and majoring in marketing. I am really excited for my new home as a frog, and I am ready to get the education I need to make a difference with my future career. I am also looking forward to living on campus and making new friends. I am thrilled to be able to further my academic career at college. 
 
Some patients with scoliosis are worried surgery will cause them back pain when they get older. Can you share a little about your experience?
In my experience, my back pain became significantly better after I had surgery. Before I had surgery, I would get random episodes of extreme back pain. As I have gotten older and since I have had surgery, I have little to no back pain. The surgery for me was life changing in terms of pain. I can sit and stand for long periods of time, which I wasn’t able to do before. Now, I don’t even think about my back anymore in my daily life since it doesn’t really hurt anymore. 
 
Is there anything you would want to say to Dr. Ramo and his team?
I would want to tell Dr. Ramo, Marivel and his entire team thank you for everything you have done for me. They did an exceptional job treating me and helping me through my scoliosis journey. There are not enough words to describe how thankful I am for the team and how they supported me. They were always there for me and answered all my questions regarding my scoliosis. I always felt at ease at Scottish Rite because of my confidence in Dr. Ramo and his team and their outstanding skills and capabilities.
 
Learn more about our expert scoliosis care and our Center for Excellence in Spine.
 

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What to Do When Your Child Has Pigeon Toes

What to Do When Your Child Has Pigeon Toes

Most feet point forward, aiming at their destination — but not all. Although this condition can cause concern for parents, intoeing, or pigeon toes, is common. Intoeing occurs when children have feet turned inward toward one another. Here’s what you should know to help your child manage this condition and enjoy an active and healthy life.

Why Children Experience Pigeon Toes

Pigeon toes can exist at birth but often become noticeable later in childhood. There are three main causes of intoeing, all of which usually resolve without treatment at different times in a child’s growth. These causes include: 

  • Metatarsus adductus. While in the womb, your baby’s position may force the front of the foot to turn inward. This position can result in metatarsus adductus, a condition in which the toes point inward while the outer edge of the foot is curved outward. Metatarsus adductus is a common cause of pigeon toes in newborns and infants. In rare cases, the condition can cause the foot to look like clubfoot. This condition usually resolves spontaneously by age 2.
  • Internal tibial torsion. In this condition, your child’s tibia, or shinbone, twists and turns the leg inward. This is also related to “packaging” of the legs in an inwardly twisted direction while in the womb. This condition usually resolves spontaneously by age 6.
  • Femoral Anteversion. With femoral anteversion, your child’s thigh bone, the femur, turns inward, causing the feet and toes to point inward as well. This condition usually resolves spontaneously by age 9. 

Intoeing often runs in families. Because of its genetic root, preventing pigeon toes is not possible. 

When to See a Provider

Thankfully, being pigeon-toed does not cause pain, and most infants and children grow out of the condition without requiring treatment. The bones correct themselves as the child grows older. However, some cases of intoeing do not resolve on their own and require medical care. 

Your child’s provider may refer you to a pediatric orthopedic specialist if:

  • Your child’s intoeing is accompanied by other foot abnormalities.
  • The foot cannot straighten out easily and feels stiff.
  • The intoeing causes pain, limping, swelling or difficulty walking.

How to Treat Pigeon Toes

The vast majority of children with intoeing due to any of the above causes will correct their rotational differences without any treatment whatsoever. When intoeing is severe and has persisted beyond the expected age at which the condition causing the intoeing should have resolved, treatment may be considered.

Your child’s provider will consider several factors when determining the most appropriate treatment. These include the cause and severity of the intoeing, your child’s age and how the problem affects your child’s daily life.

Based on this information, your provider may recommend one or more of the following pigeon toe treatments:

  • Serial Casting. A cast on your child’s leg and foot can, over time, correct metatarsus adductus. Your provider may use a series of casts as your child’s treatment progresses to continue straightening the foot.
  • Stretching. Babies with metatarsus adductus may benefit from gentle stretching. Parents can perform this physical therapy technique at home. If appropriate, your provider will show you how to stretch the foot in a way that encourages it to straighten out. 
  • Surgery. Older children with severe symptoms that don’t respond to other treatments may require surgery. During surgery, an orthopedic surgeon cuts the twisted bone and resets it in the proper position. Surgery is typically for children older than 9 who have difficulty walking due to intoeing.

You may see advertisements for special shoes or exercise programs designed to address the conditions that cause intoeing. However, the American Academy of Orthopedic Surgeons has stated these are not effective. Your best resource for help with pigeon toes is your child’s provider or orthopedic specialist. 

If you are concerned about intoeing, schedule an appointment with a foot conditions specialist at Scottish Rite for Children.

Get to Know our Staff: Ryan Calococci, Orthotics & Prosthetics

Get to Know our Staff: Ryan Calococci, Orthotics & Prosthetics

What is your job title/your role at Scottish Rite for Children?
I am an orthotics and prosthetics technician. It’s my job to make all the orthotic and prosthetic devices for our patients. I also repair broken or worn devices.

What do you do on a daily basis or what sort of duties do you have at work?
I spend half my time fabricating prosthetic devices in the lab outside the main building, and the other half is spent in the Orthotics & Prosthetics main lab on the Lower Level. My duties include filling plaster models, thermoforming plastic and making orthotic devices. I also assist practitioners with repairs, and I run the seven-axis robot carver where we prepare our models for scoliosis braces. Our technician team fabricates thousands of orthotic and prosthetic devices every year!

What was your first job? What path did you take to get here or what led you to Scottish Rite?
For my first job, I was a cart attendant and grocery bagger at Kroger when I was 16. I like to say that Scottish Rite found me. I lost my job in 2008 when the economy collapsed, and I was desperate to find another job. I heard about an entry level position at the hospital through a friend of the family, and I applied. I quickly fell in love with work, the hospital’s mission, and amazing people here. Sixteen years later, and I have certifications in both orthotics and prosthetics. I love the work I do!

What do you enjoy most about Scottish Rite?
I love the culture here – everyone is friendly, helpful and devoted to the mission. I also really love the camps and trips the hospital organizes for our patients. I have had the honor and privilege of attending a few summer hand camps and, most recently, the Amputee Ski Trip. They are truly transformative for the kiddos! 

Tell us something about your job that others might not already know?
Every prosthetic device we make is completely custom-made and will only fit the child it’s made for. It also takes a few weeks from casting to fitting for each device.

Where is the most interesting place you’ve been?
I hiked a trail called Angel’s Landing at Zion National Park in Utah. It was the scariest thing I ever, did but the view at the end was worth it!

What is your favorite game or sport to watch and play?
I don’t really play any team sports, but I do enjoy mountain biking and watching football. Go Cowboys!

If you could go back in time, what year would you travel to?
I would go back to when the pyramids were being built just so I could see how they did it.

What’s one fun fact about yourself?
I have an identical twin brother.

Let’s Be More Specific About “Non-Specific” Back Pain

Let’s Be More Specific About “Non-Specific” Back Pain

This article was originally published in a 2021 newsletter for the Pediatric Society of Greater Dallas. Written by physical medicine & rehabilitation physician Jason R. Petrasic, M.D., FAAPMR

Watch Petrasic give a lecture on this topic a Navigating Back Pain in Adolescents.  It should be no surprise that prevalence numbers for back pain in adolescence steadily increase with age and are nearly identical to that of the adult population by the age of 18. However, young patients and their parents are often surprised when formal evaluations of their insidious onset back pain symptoms yield unremarkable results. Then comes the common “diagnosis” that seemingly no one wants to hear: non-specific back pain. However, arguably this is not a diagnosis at all. The term suggests to the patient that there is no identifiable cause of their symptom. As a patient, or a parent, I want to be able to attribute the symptoms I’m feeling to a diagnosis and know there is an available treatment for my diagnosis. Furthermore, I want to know the underlying cause of my symptom or diagnosis so that I can potentially try to prevent its recurrence in the future. Clearly there are countless cases where a vague symptom or complex of symptoms is not associated with any obvious underlying diagnosis, but my suggestion is that adolescent non-specific back pain is more often a diagnosis of myofascial pain syndrome.
 
Pain is a subjective symptom, and, therefore, is influenced by a multitude of factors including actual tissue injury, previous experiences, mental health disorders, sleep quality, and central processing of pain signals. All of these can influence the intensity and duration of pain experienced from any underlying cause. In the absence of identifiable tissue injury, consider the possibility of unidentifiable tissue injury (i.e., at the cellular level) like the concept of delayed onset muscle soreness (DOMS) which is the typical muscle soreness, or pain, suffered after an intense bout of exercise in individuals not acclimated to such workouts. There may be a source of pain that is not a result of obvious structural injury and is not observable on currently available imaging modalities, nor is there a routinely used lab study to identify or screen for it. However, there may be a source of stress and tension on the supportive spine muscle(s) in a growing skeleton with disproportionally lower muscle strength, muscle endurance, and flexibility (or any combination of the three) involving key muscles that when the stress exceeds the back’s ability to support it the affected area becomes painfully symptomatic. This is most typical of myofascial pain syndrome where the problem lies at the muscle cellular level. Insidious onset neck, upper, or lower back pain are the most common presenting complaints with symptoms usually being described as intermittent and exacerbated by prolonged sitting and/or standing/walking. Rest or lying down often alleviates symptoms. Common exam findings include full range of motion of the affected area with or without tenderness to palpation, and bilaterally or asymmetrically tight hamstrings (best tested by checking popliteal angles with patient examined in the supine position with ipsilateral hip flexed to 90deg) and/or hip flexor muscles (best tested by performing the Thomas test).

Watch Petrasic demonstrate a thoracolumbar exam in an adolescent.

It is still key to consider more serious structural problems with the spine elements or muscles (or with other adjacent organ systems) when a thorough history, physical examination, and available lab or imaging studies suggests them, but when it is believed or confirmed that those problems are absent or much less likely, then myofascial pain syndrome should be more strongly entertained. This type of diagnosis offers both a long-term treatment, but often more importantly it also offers reassurance that something more serious is not developing or lingering. It should also be noted that myofascial pain syndrome can affect an adolescent competitive athlete seemingly just as easily as their more sedentary counterparts. Physical activities or competitive sports do not necessarily equate to adequate resistance training and stretching as is often assumed, especially in active, growing adolescents. Often kids involved in athletics put even more demand on their “core” and supporting musculature further exacerbating the deficit. A well-rounded, consistently, and persistently performed home exercise program is key to treating this problem along with emphasizing continued exercise and physical activity, and in some cases arranging for supplemental guidance by a physical therapist knowledgeable in spine/back care can help to optimize and accelerate recovery of more constant or severe symptoms.

Comfort level in diagnosing musculoskeletal conditions can often be understandably uneasy when musculoskeletal complaints are being fielded by primary care providers or specialists in other unassociated fields of practice. Myofascial pain syndrome is merely being suggested as a potentially likely benign diagnosis for an otherwise very common complaint that offers improved clarity to families and may help limit anxiety about what may be going missed or undiagnosed.

Learn more about Spondylolysis: A Common Cause of Back Pain in Young Athletes.

Scottish Rite For Children Neurologist Steven Sparagana Honored With Legacy Fund

Scottish Rite For Children Neurologist Steven Sparagana Honored With Legacy Fund

SCOTTISH RITE FOR CHILDREN NEUROLOGIST STEVEN SPARAGANA HONORED WITH LEGACY FUND
Fund will support tuberous sclerosis complex research
 
May 17, 2024 – The TSC Alliance® announced it has established the Steven Sparagana Legacy Fund to honor the upcoming retirement of Steven Sparagana, M.D., who served as Tuberous Sclerosis Complex (TSC) Clinic Director at Scottish Rite for Children in Dallas for 24 years and as a professor in the department of neurology at UT Southwestern Medical Center.
 
Tuberous sclerosis complex is a rare genetic disease that affects people at all stages of life. TSC causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin, eyes and lungs. Nearly one million people worldwide are estimated to be living with TSC, with approximately 50,000 in the United States. Although there is no cure, there is hope. Research has proven that early diagnosis and intervention(s) are key for optimizing long-term outcomes. Advancements in research continue to deliver new and improved therapeutic options.
 
Steven Sparagana, M.D., with patients Gabby and Izzy, age 7, at an appointment for their ongoing treatment of tuberous sclerosis complex.
“The TSC Alliance is thrilled to create this fund to recognize Dr. Sparagana’s multiple contributions to TSC clinical care and research,” said Kari Luther Rosbeck, TSC Alliance President & CEO. “He also served on our organization’s Professional Advisory Board, and his early research helped create the TSC Natural History Database, which captures patient data to document the impact of the disease on a person’s health over his or her lifetime. The database now houses information on more than 2,600 people with TSC. His impact on the TSC community has been tremendous.”
 
In 2004, Dr. Sparagana’s original $141,307 grant from the TSC Research Program at the U.S. Department of Defense was the genesis of the TSC Natural History Database. He has since served as a member of the TSC Alliance’s Natural History Database/Biosample Repository Steering Committee, and Scottish Rite for Children was one of the original pilot sites for the database. His impact, particularly as it pertains to the Natural History Database and pivotal clinical trials, has been instrumental in improving the quality of life for individuals with TSC.
 
“Dr. Sparagana’s forward-thinking vision coupled with his kind and collaborative style enabled him to be a contributor and leader of multiple clinical research projects,” said Steven L. Roberds, PhD, TSC Alliance Chief Scientific Officer. “Additionally, in 2012, he chaired the development of a new section of TSC clinical consensus guidelines focused on the importance of integration of care to treat the ‘whole person’ living with TSC.”
 
The Steven Sparagana Legacy Fund will provide an ongoing source of revenue in support of the Natural History Database and Biosample Repository as a tribute to his contributions to the creation and ongoing success of these invaluable tools. Supporters can easily contribute online.
 
“I am grateful to the TSC Alliance for this honor. It has been a privilege to serve children, families and the community affected by tuberous sclerosis complex,” said Dr. Sparagana. “The Natural History Database and Biosample Repository have provided substantial contributions to TSC basic science and clinical research, and I wholeheartedly support these important endeavors. I am also thankful to Scottish Rite for Children, which has generously supported the hospital’s TSC Clinic for more than 30 years.”