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Slopes and Waves: Natalie’s Journey to Overcoming Scoliosis

Natalie had always been an active teenager with a love for surfing, skiing, and running. She would often spend her weekends hitting the slopes or catching waves at the beach with her friends. Determined, Natalie worked hard to become the best athlete she could to achieve her goals. However, during a routine check-up at her pediatrician’s office, Natalie received some unexpected news. She had adolescent idiopathic scoliosis, a condition that causes the spine to curve. Her pediatrician referred her to Nemours Children’s Hospital, Delaware to meet with Dr. Suken Shah, a pediatric orthopedic surgeon. Despite the busy nature of the hospital, Natalie was treated with kindness, patience, and respect. Dr. Shah took the time to talk with her and understand her as a person, not just a patient with a medical condition. He mapped out a care plan for her scoliosis to get her back to her active lifestyle. At […]

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 […]

Cystic Fibrosis Awareness Month: Madelynn’s Story

Madelynn was 7 days old when the pediatrician called her mom, Rebekah, around 6pm in the evening (never a good sign). Rebekah knew right away that something was amiss. The pediatrician mentioned cystic fibrosis and said they should do some testing on baby Madelynn. She was 14 days old when she went for her first sweat test. Rebekah was petrified holding her newborn while electromagnetic currents were taped on Madelynn’s arm. Then, they had to sit in a hot room, hoping for Madelynn to produce enough sweat to test for sodium chloride levels. The waiting was awful. Early the next morning, they received a call from the pediatrician, stating they had a 3pm appointment with the pulmonologist. This is when Madelynn’s journey with CF began. When Madelynn was 7 years old, her family found out that one of her original CF doctors was retiring. Additionally, her family had recently moved to […]

World MS Day: Kalianne’s Story

At the young age of 15, Kalianne never expected to receive the challenging diagnosis of multiple sclerosis. Overnight, her world changed. When Kalianne woke up sweating with chills and couldn’t feel the right side of her face or body, her dad immediately took her to the local ER. Kalianne was so nervous to be heading to the hospital, she got sick in the car on the way there. Once they arrived, Kalianne was whisked away for blood tests and a CT scan. After looking at her test results, the ER staff concluded that Kalianne was having severe headaches, which was causing the vomiting and other symptoms and then they sent her home. A few days had gone by, and Kalianne’s symptoms continued to worsen. She was experiencing numbness in her face and tongue, her limbs felt heavy, and she was losing the ability to write clearly. After researching her symptoms […]

From Dr. Shrader to Dr. Straighter

From using a walker to taking unassisted steps, Mari has come a long way on her journey with cerebral palsy, proving that having a condition does not define who she is or what she can accomplish.

Cystic Fibrosis Awareness Month: Gray’s Story

Two days after his birth, Gray started having gastrointestinal complications. It was found that his lower intestine was in a knot and his meconium was so compacted, the surgeons’ tool couldn’t clear it out. Gray was immediately admitted to the NICU and taken in for emergency surgery, before his mother was even discharged from the hospital. Six days after he was born, “We ended up getting a call from Nemours Pulmonology confirming Gray’s diagnoses of Cystic Fibrosis. They told us that he has ‘double delta f508’ and that he has one of the most common genetic mutations for CF,” says Gray’s mother, Lauren. “The phone call was brief, and everything was a blur. We were told that his mutation qualified for really good treatments and that he would have a good prognosis!” “Gray was born with a common condition in children with cystic fibrosis called meconium ileus in which a […]

Living With Morquio A – Zane’s Story

At 7 months old, Zane Brooks was diagnosed with Morquio A, a genetic condition that causes an enzyme deficiency with bone, heart, vision, and hearing problems. After his older brother (age 2.5 at the time) was diagnosed with Morquio A, Zane underwent genetic testing where he found out he did as well. “As soon as we heard that Morquio may be the diagnosis, we researched online and quickly came to the conclusion that Nemours was the best place for treatment,” said Zane’s mother Kimberlee. “Between blood work and official diagnosis, we watched many medical presentations on YouTube from Dr. Mary Theroux and Dr. Will Mackenzie and knew Nemours was the safest place for our boys.” The day of Zane’s diagnosis, the Brooks reached out to Dr. Theroux and Colleen Ditro. “Within 24 hours we had kind, knowledgeable emails in response,” said Kimberlee. “I remember talking with Colleen days after diagnosis as she walked […]

Page 19 of 28

Page 19 of 28

Page 19 of 28