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Connect with the Norton Children’sNeurosurgery Team
The board-certified and fellowship-trained neurologists with Norton Children’s Neuroscience Institute, affiliated with the UofL School of Medicine, are the leading providers of care for children with neuromuscular disorders, including Duchenne muscular dystrophy (DMD), in Louisville, Kentucky, and Southern Indiana.
Norton Children’s Hospital is the pediatric teaching hospital for the University of Louisville School of Medicine. Our physicians are training the next generation of pediatric specialists.
We’ll determine the severity of your child’s DMD and create a treatment plan that minimizes risk, so your child can get back to being a kid.
Our multidisciplinary approach, in partnership with the Muscular Dystrophy Association (MDA), sees patients in a single clinic for multiple specialties, including neurology, pulmonology, orthopedics, physical therapy, occupational therapy and speech therapy.
DMD is a genetic disorder that affects muscles and primarily occurs in boys. Symptoms typically start between age 3 and 5, with weakness that affects the hips and legs, and results in abnormal walking. As the disease progresses, the weakness affects the upper body as well. That weakness may also affect the heart and respiratory muscles.
If our team suspects DMD, we will order specific genetic testing through a blood test. Genetic testing will determine if there are abnormalities in a gene associated with a muscle protein called dystrophin. Dystrophin is a vital part of the muscle fiber. When it is abnormal, muscle cells are easily damaged.
Our physicians may prescribe medications known as corticosteroids, which have been shown to be effective in slowing the course of DMD. Depending on the specific mutation found in the genetic testing, your child may be eligible for specific gene therapies.
As a child’s muscles that aid in breathing become weaker, assistance with coughing and breathing may be necessary. Our team may prescribe noninvasive breathing devices, such as a CPAP (continuous positive airway pressure) or BiPAP (bilevel positive airway pressure) device. Additional support may include placement of a tracheostomy (a hole in the breathing tube) and use of a ventilator.
If tests show your child’s heart is affected, our team may prescribe medications that slow the course of cardiac muscle deterioration.
As children with DMD lose their mobility, they may need orthotics, braces, walking aids or wheelchairs. Durable medical equipment, such as mechanical lifts, shower chairs and medical beds, are prescribed as needed.
Our team members will discuss diet, exercise and stretching with you and your child to help keep your child’s body as flexible and mobile for as long as possible. Regular visits to physical therapy and occupational therapy are important. The orthopedic team also will monitor your child’s bone health. Children with DMD are at increased risk for scoliosis, and our team will monitor this.
Debbie Gilbert, family advocateBrittany Hornickel, nurse coordinatorTeresa Javier, Speech therapistLynn Lukins, physical therapistHannah Ragan, occupational therapistLeah Todd, social workerJessica Waits, Muscular Dystrophy Association clinic coordinator