Although there’s no cure just yet for osteogenesis imperfecta, our world-renowned orthopedics experts at Nemours are here to help. We’re dedicated to helping children with brittle bone disease develop increased bone mass and muscle strength, prevent or control osteogenesis imperfecta symptoms and become as independently mobile as possible.
Children born with the genetic disorder osteogenesis imperfecta (also known as brittle bone disease) have bones that break easily — often from little or no apparent cause. These fractures are due to a collagen defect that causes the bones to be excessively fragile (collagen is a protein that makes up the framework of the body — the bones, skin, cartilage, etc.).
At Nemours, we believe in a strong doctor-patient relationship and understand that each child with osteogenesis imperfecta has unique needs. That means we'll work together to determine your child's specific needs when it comes to:
- seating: seating devices to encourage healthy posture and prevent bowing of the long bones
- adaptive equipment: to help your child get around and function day-to-day
- orthopedic intervention
Appointments: (302) 651-4200.
For Appointments: (302) 651-4200
- hard copies or electronic copies of all imaging studies including X-rays, MRI, or CT scans
- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
- Patient Presents Without Legal Guardian (PDF)
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Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
At Nemours/Alfred I. duPont Hospital for Children, named one of the best children’s hospitals in the country for Orthopedics by U.S. News & World Report, we provide comprehensive, personalized treatment for osteogenesis imperfecta in children.
We know that dealing with osteogenesis imperfecta can be scary and challenging — especially when your child’s first diagnosed. Our doctors’ compassionate expertise — coupled with our child-centered, family-oriented atmosphere — helps to minimize the stress families and children like yours often experience. We’re here to help guide you throughout the evaluation, treatment, and rehabilitation process.
An Experienced Team Dedicated to Kids With Osteogenesis Imperfecta
Because osteogenesis imperfecta can affect your child in many ways, you’ll have access to an entire team of Nemours specialists, including:
- orthopedic surgeons
- physical therapists
- occupational therapists
- adaptive technology experts
- orthotists (specialists who fabricate and fit braces and other supports)
- social workers
Special Therapy and Services for Children with Osteogenesis Imperfecta
Some children with osteogenesis imperfecta are shorter than other children their age and may need special seating devices to encourage healthy posture and prevent bowing of the long bones.
We also treat a variety of conditions relating to brittle bone disease, including:
- frequent fractures
- dental problems (if the tooth enamel appears brown and wears down easily)
- ligamentous laxity (very flexible ligaments)
- spinal deformities
At duPont Hospital for Children, we also provide a variety of services to diagnose and treat osteogenesis imperfecta symptoms, including:
- metabolic bone clinic for the IV treatment of osteogenesis imperfecta
- bone density testing
- bone biopsy
- skin biopsy
- gait training
- surgical management
- pamidronate therapy
- magnetic resonance imaging (MRI)
- social work consultation
- pool therapy
- developmental evaluation
- guidance about daily living (lifting, transporting, activities)
- positioning training
- assistive or adaptive services
- physical and occupational therapy consultation
We also offer a Transition of Care clinic to help our teenage osteogenesis imperfecta patients and their families prepare for — and get the care they need in — adulthood.
No matter how severe your child’s osteogenesis imperfecta, know that at Nemours we do whatever it takes to give your child the very best, most compassionate treatment possible. We treat every child as we would our own — your child, our promise.