How can you treat O.I.?

Treatment
There is not yet a cure for O.I. Treatment is directed toward preventing or controlling the symptoms, maximizing independent mobility, and developing optimal bone mass and muscle strength. Care of fractures, extensive surgical and dental procedures, and physical therapy are often recommended for people with O.I. Use of wheelchairs, braces, and other mobility aids is common, particularly (although not exclusively) among people with more severe types of O.I.

People with O.I. are encouraged to exercise as much as possible to promote muscle and bone strength, which can help prevent fractures. Swimming and water therapy are common exercise choices for people with O.I., as water allows independent movement with little risk of fracture. For those who are able, walking (with or without mobility aids) is excellent exercise. People with O.I. should consult their physician and/or physical therapist to discuss appropriate and safe exercise.

Children and adults with O.I. will also benefit from maintaining a healthy weight, eating a nutritious diet, and avoiding activities such as smoking, excessive alcohol and caffeine consumption, and taking steroid medications — all of which may deplete bone and make bones more fragile. For more information on nutrition, see the O.I. Foundation fact sheet titled “Nutrition.”

A surgical procedure called “rodding” is frequently considered for people with O.I. This treatment involves inserting metal rods through the length of the long bones to strengthen them and prevent and/or correct deformities. 

This treatment is most commonly done in the legs and the arms as needed. Rodding not only corrects bowing (curving) of the bone, but also adds an internal support that helps to prevent further fractures. The age of the child on which this operation is performed depends greatly on the size of the bones, but it is frequently done on children as young as two or three years old.

When considering this option for your child, be sure to discuss the pros and cons of telescoping and nontelescoping rods with your orthopedic surgeon. Also, keep in mind that this is a treatment that must be repeated as the child outgrows the rods.

Several medications and other treatments are being explored for their potential use to treat O.I. These include growth hormone treatment, treatment with intravenous and oral drugs called bisphosphonates, an injected drug called teriparatide (for adults only) and gene therapies. It is not clear if people with recessive O.I. will respond in the same manner as people with dominant O.I. to these treatments. The O.I. Foundation provides current information on research studies, as well as information about participating in clinical trials.

Prognosis
The prognosis for a person with O.I. varies greatly depending on the number and severity of symptoms. Respiratory failure is the most frequent cause of death for people with O.I., followed by accidental trauma. Despite numerous fractures, restricted physical activity, and short stature, most adults and children with O.I. lead productive and successful lives. They attend school, develop friendships and other relationships, have careers, raise families, participate in sports and other recreational activities and are active members of their communities.