About this topic

Osteogenesis imperfecta is also called OI or brittle bone disease. OI is present at birth. With this condition, bones can break very easily and, sometimes, without any obvious cause. Even though bones break easily, they can still heal at a normal rate. Because there is a defect in a gene, the bones are not as strong as normal. A person with mild OI may only have a few bone breaks in a lifetime. A person with a more severe type can have hundreds of them. The number of bone breaks often becomes fewer in adulthood.

The severity and outlook of OI depend on what type of OI a person has. There is no cure for this problem. The goal of treatment is to prevent more bone breaks and problems.

What care is needed at home?

• Ask your doctor what you need to do when you go home. Make sure you ask questions if you do not understand what the doctor says. This way you will know what you need to do.

• Take all drugs to increase bone strength and density as ordered by the doctor.

• Use braces, splints, or casts to protect healing bones. Your doctor will instruct you on how to care for these.

• Use crutches, a walker, or a wheelchair to get around safely. Your doctor or therapist can teach you how to use these.

• Attend a support group or have your child see a counselor if your child is having problems coping with this condition.

What follow-up care is needed?

• Your doctor may ask you to make visits to the office to check on your progress. Be sure to keep these visits.

• Your doctor may send you to a physical therapist to learn safe exercises and safe ways to get around.

What drugs may be needed?

The doctor may order drugs to:

• Increase bone strength and density

Will physical activity be limited?

• Avoid activities that could raise the risk for a bone break. Talk to your doctor about the right amount of activity.

• Do exercises, such as swimming or walking, to keep muscles and bones strong. Ask your doctor what is safe for you or your child to do.

• Children, teenagers, and adults should avoid high impact activities or activities that have more chance for falls or bone breaks.

What changes to diet are needed?

Eat a diet rich in calcium and vitamin D to build strong bones.

What problems could happen?

• Disability

• Long-lasting deformity

• Breathing problems

• Hearing loss

• Spinal cord or brain stem problems

What can be done to prevent this health problem?

Genetic counseling may help to learn the risk of this problem if there is a family history.

When do I need to call the doctor?

• Fingers or toes become cold or look pale when wearing a cast or splint

• New pain, even if no apparent cause

• Numbness or tingling in an arm or leg

Helpful tips

• Do not pick up your child under the armpits. Instead, put one hand between the legs to support the buttocks and the other hand on the back of the shoulders, neck, and head.

• Gently lift up the legs by the ankles to change a diaper.

• Never pull on your child’s arms or legs.

• Use padding or foam in car seats and under harnesses.

• Do not use umbrella type strollers.

• Keep a letter from your child's doctor or medical records with you at all times. This may prevent suspicions of child abuse by healthcare providers.

• Avoid alcohol, smoking, and taking steroids. This can lower bone density and put you at risk for more bone breaks.

Teach Back: Helping You Understand

The Teach Back Method helps you understand the information we are giving you about your child. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these:

• I can tell you about my child's condition.

• I can tell you what I can do to try and protect my child from broken bones.

• I can tell you what I will do if my child has more pain or numbness or tingling in an arm or leg.