The pediatric osteogenesis imperfecta (OI) team at our university hospital was established in 1991. The multi- and inter-disciplinary team consists of: pediatric neurologist, nurse, nursing assistant, physiotherapist, occupational therapist, orthopedic surgeon, orthotist, radiologist, dentist and geneticist. We also have a close collaboration with other specialists.
Our assignment is high qualified diagnostics, functional assessments and also individualized evaluation and advice in order to optimize treatment, medications and other interventions. A special concern is to assess untreated children with different types of OI to find criteria for and monitoring treatment. The team follows most children and youths with OI, from an early age and does regular follow-ups until 18 years of age, when transition to adult care is made.
We follow growth, abilities and disabilities using appropriate radiology, dual-energy X-ray absorptiometry (DXA), bone markers, physical examinations, dental development, range of movements (ROM), gross motor function measure (GMFM) and patient reported measurements as activities scale for kids (ASK) and Pediatric evaluation disability Inventory (PEDI). Genetic analyses are now also performed.
After each individualized assessment by the team the results and advice are rapidly reported to the childs local hospital, rehabilitation team and dental specialist.
The team has in total during the years assessed >300 children and adolescents.
We prescribe and monitor bisphosphonate treatment to children with either severe OI (type III/IV) or milder forms with skeletal pain and vertebral compression fractures. Advanced surgery by pediatric orthopedic surgeons is also performed.
Information brings knowledge and confidence both to the patients and to their local teams\. Early diagnosis, care and treatment can also prevent some skeletal deformities and fractures.
17 May 2014 - 20 May 2014