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Riley’s Scoliosis Journey

When Riley was born, she was diagnosed with a rare bone dysplasia that made her bones irregular in size and shape. As she grew, the dysplasia began to manifest itself in her spine, and she was diagnosed with congenital kyphoscoliosis at just one year old. For the next five years, Riley saw a specialist in Massachusetts and had to wear a brace for over 18 hours a day for six years. When Riley’s family moved to Pennsylvania for a new opportunity, they were referred to the amazing team at Nemours Children’s Hospital, Delaware. There, they met with Dr. William Mackenzie, who continued to provide Riley with the best care possible. As time went on, she had to undergo several casts, and implantation of magnetically controlled growing rods. This surgery, a complex procedure performed by both Dr Mackenzie and Dr. Suken Shah, pediatric orthopedic spinal surgeon, was successful to maintain the […]

Scoliosis Awareness Month: Riley’s Story

When Riley’s father noticed a slight curvature in her spine, they decided to have it checked by a doctor. They headed to Nemours Children’s Health, Jacksonville where Dr. Neal diagnosed Riley with scoliosis in the summer of 2015. Scoliosis is a medical condition in which a sideways curvature is found in the spine, causing issues such as back problems and discomfort. When Riley was diagnosed with scoliosis at age 12, her spine curvature was about 25 degrees. Riley went through periods of wearing braces to try and correct the curvature. Unfortunately, the braces weren’t producing the results she had hoped. As she got older, the curvature continued to worsen to about 50 degrees. When she was 14, Riley decided to stop treatment and wait for spinal fusion surgery until she felt ready. By age 18, Riley’s pain grew stronger, and she decided it might be time for the surgery. Riley […]

Scoliosis Awareness Month: Smith’s Story

Scoliosis is a condition that affects the curvature of the spine and can be a challenging diagnosis for anyone to receive. For the Downing family, this diagnosis became a reality when their son, Smith, was only 15 months old. When Smith’s mother noticed asymmetry with Smith’s back, the Downing family sought out medical advice. After completing an MRI scan, the results confirmed that Smith had idiopathic infantile scoliosis with a 56-degree S-curve.   Smith’s scoliosis was also progressing. The Downings were concerned that if it were to continue at a high rate, Smith’s Smith’s scoliosis was also progressing. The Downing’s, who knew little about scoliosis at a toddler’s age, began to research as much as possible. They reached out to several doctors and hospitals but found little comfort in the limited options for correction. Most options presented to them by physicians included surgery with high complication rates, until they met Dr. […]

Scoliosis Awareness Month: Willie’s Story

At three years old, Willie was diagnosed with infantile idiopathic scoliosis, a condition that caused a curvature in his spine. Willie’s journey began when his mother, Breana, took him to see several specialists because he wasn’t hitting developmental milestones on time. Willie started walking and crawling later than other children his age. He also began to experience chest pain and shortness of breath. At first, Willie’s specialists thought he might have cerebral palsy or multiple sclerosis. It wasn’t until they went to Nemours Children’s Health in Jacksonville that he was diagnosed with scoliosis. Willie underwent a rigorous treatment plan that included wearing a halo and using traction to stretch his large curve before surgery, a rare process reserved for special cases. He also had many occupational and physical therapy sessions. With the help of Dr. Kevin Neal, Willie is in complete recovery at 10 years old. It was a tough […]

Quinn’s Scoliosis Journey

“We are so happy with Dr. Khoury and what he’s been able to do for our son. He is an amazing doctor. He always treats everyone with respect. We are excited to continue our scoliosis journey with Dr. Khoury and Nemours.” –Mom to Quinn (age 4) Quinn’s mom first noticed something was wrong with his back when he was just 2 months old. “I could feel a bump on one side of his back,” she explains. “I thought it was lack of muscle tone…I didn’t know that what I was feeling was the rib hump.” When she mentioned this to Quinn’s pediatrician, she diagnosed him with torticollis and Quinn began doing physical therapy. His torticollis eventually got better, but mom knew there was still something wrong with his back. That was because Quinn didn’t sit on his own until around 8 months, and he didn’t crawl until after 9 months. […]

Apifix: A Unique New Scoliosis Treatment Option

Contributed by Kevin Neal, MD, orthopedic surgeon What is the Apifix device that is used to treat scoliosis? The Apifix device has a few different names. It can also be called minimally invasive deformity correction (MID-C) or an “internal brace.” The Apifix device is a rod that is used to straighten scoliosis curves without a major spine fusion. Why do some patients want to avoid spine fusion? A spine fusion is where the vertebral bodies are stabilized so they can’t move, typically with rods and screws. The joints between the vertebrae bones are removed and bone graft is placed to help the vertebral bodies grow together and become solid. Preventing movement of the spine keeps scoliosis curves from getting worse and keeps the spine straight after it has been corrected. Spine fusion is a great operation for many patients with scoliosis. But some patients want to treat their scoliosis without […]

Overcoming Scoliosis- Alexis’ Spine Story

Contributed by Alexis. At the age of twelve when I hit puberty, my back started bothering me a lot. I made an appointment with my pediatrician, where I learned I was developing scoliosis. She referred me to Nemours Children’s Hospital, Delaware, where I met with pediatric orthopedic surgeon, Dr. Suken Shah for further examination. After an x-ray, we found that I had two curves measuring 22 and 23 degrees. A few months later, I received a brace to prevent my spine from getting worse. My scoliosis made my hips so off-balance that it affected my legs. I was also given a lift to wear in my shoe because my left leg was about an inch shorter than my right leg. I was supposed to wear the brace at least 18 hours a day, but I usually wore it for about 23 hours a day. I ended up wearing the brace […]

A Fighting Spirit- Emilee’s Story of Heart and Spine

If resilience had a name, it would be that of 12-year-old Emilee. She was born with a complex heart defect called single ventricle that required heart surgery when she was just 2 days old. Her fighting spirit endured through three more heart surgeries and several heart catheterizations. Her heart surgeon, Dr. Christian Pizarro, assisted by cardiac anesthesiologist, Dr. Ellen Spurrier, and their highly specialized team—cared for her–watching over Emilee day and night. It was a scary and unsettling time for her family, who stayed right by her side. Through it all, Emilee thrived. But her health challenges continued.  Emilee was diagnosed with scoliosis that progressed to the point that surgery was needed.  In January 2022, she underwent a spinal fusion, a major surgery for anyone, but especially risky for someone with a single ventricle heart defect. Pediatric spine surgeon, Dr. Peter Gabos, performed the complicated operation with Dr. Spurrier again […]

Dancing Perfection- Samantha’s Spine Story

During a routine scoliosis check in school, Samantha received some alarming news. She was diagnosed with scoliosis and her spine had grown into an S shape. After meeting with multiple doctors and specialists, Samantha’s family decided to come to Nemours Children’s Hospital, Delaware to meet with Dr. Suken Shah, pediatric orthopedic surgeon. Due to the severity of the curve, Dr. Shah determined that a posterior spinal fusion was needed to correct her spine and prevent pain and disability in later life. Samantha was nervous but determined. She continued dancing, her passion, up until the day of her surgery. Her determination continued as she was able to stand within hours of her surgery, and walked the hospital halls the next day thanks to excellent pain management and the Nemours rapid recovery pathway.  She was also thrilled to learn she had grown a couple of Inches! Not sure she would ever dance again, Samantha […]

Expert Question and Answer

Live Q&A: Spine & Scoliosis

In this video, recorded on June 28, 2021, Suken Shah, MD Chief, Spine & Scoliosis Center and Brett Shannon, MD, orthopedic surgeon, discuss and answer questions about scoliosis. Learn more about: When and why your child may need surgery. What surgery is like. Life with spinal fusion surgery. Complications and risks. If you have questions for Dr. Shah and Dr. Shannon, post them in the comments section on Facebook. Q: When a pediatrician first discovers a small curve in a young child, what is the best way to approach the new diagnosis? A: Kids under age 10 are more likely than older kids to need further monitoring, or even sometimes intervention from an orthopedic surgery team. If you detect any asymmetry of the back, or trunk, or shoulders, it’s important to have them come in and see us for a further evaluation. This includes the child’s history and a physical […]

Anthony’s Scoliosis Journey

This post was written by Anthony’s mom, Debbie.  “Something was Different” Anthony was about six months old when I started to notice something was different about his back. He would roll over and try to sit up and there was an obvious bulge/curvature in his spine. I took him to my pediatrician who told me there wasn’t anything to worry about. He informed me that some children take a bit longer to sit up on their own. At this time, I had two-year-old twins at home and was very aware that children progress differently, but there was no overlooking the curve of his spine. Unhappy with that visit, I scheduled an appointment with a specialist at a hospital in Philadelphia, PA. Finally a Diagnosis Anthony was about a year old when he was diagnosed with infantile scoliosis. My family was with me in the room when the doctor put his […]

For Kids with Scoliosis: Nemours Host 4th Annual Mentoring Event, powered by Nemours Children's Health System

For Kids with Scoliosis, Nemours Hosts 4th Annual Mentoring Event

This year marked the fourth time that patients and families gathered to share stories, common concerns, and inspiration at our annual Patient and Parent Mentoring Event, hosted by the Nemours Spine and Scoliosis Center. More than 100 people gathered at Nemours/Alfred I. duPont Hospital for Children on a gorgeous spring day. As in years past, this event was open to families with adolescents who have idiopathic scoliosis, which is the most common form of the disease. More than 3% of the population has scoliosis, a condition that causes the spine to curve from side to side. For some, no treatment is necessary, just periodic monitoring of the curve by a healthcare provider. For others, treatment is required, which can include bracing to halt or slow down the progression of the curve, or surgery to correct the deformity. At the mentoring event this year, Dr. Suken Shah started things off by […]

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