Phoenix Children’s Osteogenesis Imperfecta (OI) Clinic is focused on preventing fractures, treating bone deformities and providing customized care for each patient. Hear from their expert team about how they offer care and guidance to OI families from the earliest moments of life and continue as they grow.
Children with osteogenesis, andera or O I for short can present with easily broken bones, discoloration of the white of the eye or bone deformities such as bowing of the legs. Parents of Children with O I often notice frequent broken bones or bone limbs. In some cases, parents learn their child has O I. Even before birth, the severity of O I can vary. It can be mild causing a few fractures during a person's lifetime or more severe. In severe cases. O I can be life threatening. Most pediatricians and obstetricians are aware that osteogenesis imperfecta is caused by defective genes. However, if you have a patient with this condition, finding an O I expert to refer them to may be challenging at Phoenix. Children's RO I Clinic is the only one of its kind in the Southwest diagnose and treat Children with O I and specialize in even the most complex cases. We're unique in that we're the only multidisciplinary clinic with specialist trained in O I and metabolic bone disease. Our O I clinic is part of the brittle Bone disorders Consortium. We are in a nine year study funded through the National Institutes of Health to look at patients bone development over time. Our highly specialized O I team includes Doctor Lombardo, Doctor Smith and myself. We were each trained by national leaders in O I. So your patients benefit from nationally renowned experts right here at Phoenix Children's as a geneticist. I assist in making the initial diagnosis and interpreting test results for patients with classic O I or for those whose diagnosis is unclear. My role is especially important in undiagnosed or complex bone disease cases. Often O I is inherited from parents who may not know that they are carriers. At Phoenix. Children's. We provide comprehensive care for the entire family by performing a family risk evaluation. I completed my fellowship at No Morris where I specialized in O I. During my career, I performed more than 400 0 I related surgeries. Now at Phoenix, children's parents and kids get the benefit of that depth of experience. If a child requires surgery, we can perform an osteotomy on both legs, which includes cutting the bone aligning it and placing a telescoping rod when possible to support the bone. These surgeries help prevent repeated fractures of the long bones in the arms and legs and help these bones heal correctly. We can also operate on multiple bones in one surgery. So there's less recovery time as the endocrinologist on the O I team, I prescribe medications to help increase the density of kids bones. As a physician with O I who also is the parent of a child with a condition. I understand the unique concerns of our families to make it more convenient for families. Our O I clinic is held twice a month and takes place over two days. One of our most important benefits of our multidisciplinary clinic is that we are all in the clinic on the same day and see the same patient. On the first day, we performed dexa scans x rays of the spine, upper and lower extremities, pulmonary function testing and eye exams. On the second day, patients undergo hearing testing are evaluated by physical and occupational therapy and are seen by the O I specialists and clinic. We meet with each patient and family to provide individualized treatment options. We also work in partnership with other specialists throughout our health system depending on the needs of the child and family. It's a collaborative process and we keep the referring provider informed throughout this process. At Phoenix Children's. Our team is dedicated to making a difference in the lives of our patients with O I. Please contact us to learn more or to make a referral.
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