Osteogenesis Imperfecta Program
Osteogenesis Imperfecta (OI) is a congenital disorder characterized by frequent bone fractures. These fractures are due to a collagen defect in the bone that causes the bones to become brittle. There are several different types of OI with varying degrees of severity and subsequent disability of those involved.
The mission of the Osteogenesis Imperfecta Program is to provide the highest quality of multidisciplinary care to pediatric OI patients and their families. The program is dedicated to maximizing the function of the child and to providing education to the families and associated health care providers. The clinic members and family work together in determining the child's specific needs regarding seating, adaptive equipment, counseling, and orthopedic intervention as appropriate.
The team consists of the family, an orthopedic surgeon, and therapeutic services, clinical nursing, and adaptive aquatics experts. Complete subspecialty care and consultation is available as needed in Therapeutic and Rehabilitation Services, Orthotics, and Dentistry. The hospitals therapeutic services team will provide outpatient therapy on an outpatient basis. These therapies may include developmental stimulation, splinting, gait training, adaptive aquatic exercise, and ADL training.
Checklist for OI Clinic
Positioning Early and Often Counts
Services Available:
- Medical history and physical
- Bone densitometry
- Bone biopsy
- Skin biopsy
- Pamidronate therapy
- Magnetic resonance imaging (MRI)
- Social work consultation
- Pool therapy
- Splinting
- Developmental evaluation
- Discussion of lift/transport/diapering/daily activities
- Positioning training
- Assistive or adaptive services
- Physical and occupational therapy consultation
Typical Diagnoses/Problems:
- Frequent fractures
- Blue sclera (the whites of the eyes have a bluish or greyish tint)
- Poor dentition (tooth enamel appears brown and wears down easily)
- Shortness of stature
- Ligamentous laxity (very flexible ligaments)
- Spinal deformities
