There is currently no cure for neuromuscular diseases; treatment targets your child’s specific symptoms to slow disease progression and improve quality of life. For your convenience, your child’s care is all in one place -- on one floor -- at the Lenox Baker Children’s Hospital, which features attached parking and an entrance ramp. We also schedule your child’s appointments on the same day whenever possible, to minimize the inconvenience of multiple trips.
Disease Monitoring
Ongoing assessments look for early signs of problems common in children with neuromuscular diseases. We coordinate care with the right specialists, and we tailor and adjust your child’s care for the highest possible physical, psychological, and social well-being. We often monitor children into young adulthood.
Medications
Anti-inflammatory corticosteroid medication can slow muscle damage and weakness in Duchenne muscular dystrophy. Our team stays current with advancements in new and improved medicines for neuromuscular diseases. We carefully monitor your child and recommend the right time to start -- or stop -- medication.
Physical and Occupational Therapy
Physical and occupational therapy can improve range of motion and help maintain your child’s strength, mobility, and independence. Our therapy evaluations and treatments take place in a gym -- not an exam room -- with ample room to play. High-school and medical-student volunteers often assist with gym play to make it more fun and improve your child’s social interaction.
Orthotics and Assistive Devices
When appropriate, we recommend and train your child to use walking braces and mobility devices -- such as walkers, wheelchairs, and scooters -- to help maintain independence. We also introduce a variety of assistive technologies and assistive communication devices (iPad apps, etc.) to keep your child engaged and connected with others.
Pulmonary Treatments and Care
Our pediatric pulmonologist performs pulmonary function testing to identify weakness in the muscles that help your child breathe. Treatments may include a cough assist machine, a noninvasive breathing support device (CPAP or Bi-PAP), or a ventilator in more severe cases.
The team’s pediatric cardiologist looks for signs of heart muscle weakness and deterioration through an electrocardiogram, heart ultrasound, and heart MRI testing and may recommend cardiac medications.
Surgery
Your doctor may recommend surgery for complications as your child grows and develops, such as problems with the bones and joints or the digestive system. If your child needs surgery, you can be confident in Duke Children’s, which has been verified as a level I children's surgery center by the American College of Surgeons. This designation recognizes our commitment to providing the safest and highest-quality surgical care to our young patients.
Family and Support Services
We know how caring for a child with a neuromuscular disease can change the family dynamic. We are here to answer your questions and make your time at Duke Children’s as easy and comfortable as possible. Our clinic is staffed with a dedicated licensed clinical social worker.
Care Coordination and Support
Our nurse care coordinator and social worker help you navigate the medical system and coordinate the variety of health services your child needs. They can help you work with insurance providers, connect with resources, and manage the details related to your child’s care. Our social worker can help your entire family adjust to a neuromuscular diagnosis, monitor your child’s behavioral and developmental health, and assist with school support regarding modifications for your child.
Doctor visits and hospitals can be overwhelming and sometimes scary for children. Our child life team can enhance the care your child receives. They explain procedures in ways your child can understand, offer encouragement and emotional support, and use fun activities to take your child’s mind off treatment.
