Support for Osteogenesis Imperfecta

NYU Langone offers several supportive services to help educate parents and children about osteogenesis imperfecta. Our specialists can help you and your child to prevent bone and other injuries and to address your concerns about your child’s safety. This is especially helpful to parents of children who enjoy playing sports. 

Families can also benefit from a wide range of wellness services offered at the Sala Institute for Child and Family Centered Care. Adolescents and adults may work with experts at the Hospital for Joint Diseases at NYU Langone for lifelong support and physical therapy.

Care Coordination

NYU Langone has a team of pediatric hospitalists who work with orthopaedic surgeons, physical and occupational therapists, nurses, and child and adolescent psychologists to ensure the seamless delivery of care before and after treatment for osteogenesis imperfecta. 

Our hospitalists can also introduce you to other doctors who may be involved in your child’s surgical care, such as anesthesiologists, to ensure that you are in communication with all of your child’s care providers. 

Physical and Occupational Therapy

Therapists at NYU Langone can teach you and your child exercises that strengthen muscles and build bone mass without putting pressure on fragile bones. For instance, your child can exercise in the water at NYU Langone’s Rusk Rehabilitation aquatic therapy center. It is the only hospital-based facility in New York City offering this form of physical and occupational therapy. 

Our therapists can also provide education and information to parents about which activities are safe for a child with osteogenesis imperfecta, and how to carry a young child or baby who has a severe form of the condition without causing injury. 

Nutrition and Medication

Good nutrition plays an important role in maintaining bone and overall health. Our registered dietitians can make suggestions about which foods are high in calcium and vitamin D—both of which support bone growth—and offer advice about calcium and vitamin D supplements for children with osteogenesis imperfecta. Medications, such as growth hormones, may also be recommended to improve bone mass in children who are not growing at a normal rate due to frequent fractures.

Clinical Genetics

NYU Langone’s clinical genetics experts provide counseling to people with a family history of osteogenesis imperfecta or to expectant parents who have another child with the condition. Our genetic counselors can recommend prenatal tests, such as amniocentesis or chorionic villus sampling, to determine if your unborn baby has specific genetic mutations associated with osteogenesis imperfecta. 

Amniocentesis allows for an examination of a sample of the amniotic fluid that surrounds the baby in the womb, and chorionic villus sampling enables specialists to analyze a sample of the placenta, which carries oxygen and nutrients to the baby during pregnancy.

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