Osteogenesis Imperfecta Clinic

We provide comprehensive, family-centered and coordinated care for children, adults and families affected by osteogenesis imperfecta (OI). Our team of specialists ensures all of your child's needs are met in one convenient visit. As a result, we've become the destination for OI care in the Midwest, and patients and families regularly rate their experience with us as outstanding. 

We have one focus: kids.

Our goal is to improve the lives of those affected by OI by maximizing wellness and independence. We combine our expertise in pediatric orthopedics, genetics, prenatal diagnoses, physical & occupational therapy, nutrition and social work to address the various issues impacting health and wellness. We individualize care to meet your child's specific needs and always meet one-on-one during your appointment, including consultations with:

• Our geneticist and nurse practitioner manage your child’s ongoing medical needs, such as bisphosphonate treatment. They also monitor bone density (DEXA scans), lab work, growth and development, and assesses adaptive functioning and emotional health. Additionally, they coordinate care with the treatment team, which includes your child's primary care doctor. 
• A pediatric orthopedic surgeon who will assess your child’s bones, joints and spine. When corrective surgery is needed due to fractures or growth problems, our surgeons are experienced and highly competent in the latest surgical techniques, including Fassier-Duval telescopic rods.
• Our dietitian who will discuss the importance of nutrition to maximize bone health, avoid obesity and ensure proper bowel function. 
• Our physical therapist who will evaluate and recommend activities to maximize strength and bone health as well as provide guidance regarding protective positioning, when needed.
• Our social worker who will help you with the emotional and social aspects of living with OI. Our social worker can also help with insurance issues and coordinating special services.
• Our licensed genetic counselor who will discuss the issues associated with genetic testing and genetic counseling.
• Our clinical nurse coordinator who is present at each visit and keeps track of your child's care. This individual helps in coordinating referrals, handles paperwork and is available by phone when you need us. She will serve as your primary contact person.

About OI.

Osteogenesis imperfecta refers to genetic conditions which alter the integrity of a specific type of collagen. Collagen is an important structural component in the body. It weaves throughout bone to provide support and strength. There are a number of different types of OI that vary in genetic cause and severity. In all types, the effect on collagen leads to weakened bones and an increased risk of fractures. In some types, the bones curve and bend, including the spine. While the effects on bone are commonly associated with OI, it's important to realize that altered collagen also has the potential to impact other organs and systems, such as the heart, lungs, eyes, teeth and hearing. Our OI Clinic team will monitor your child for other effects of OI to ensure all other needs are met.