Many Osteogenesis Imperfecta families find that their doctors become like members of the family. Eventually, you may find it necessary to take your child to a physiatrist (a habilitation and rehabilitation specialist). Physical and occupational therapists can help your child develop muscle tone, strength, and cognitive skills.

Social workers who work with children with disabilities may also be helpful with family and marital difficulties should they arise. It would be wise to evaluate your health insurance coverage.

Osteogenesis Imperfecta can become very expensive, and the financial strain can often become as burdensome to a family as the health problems. There are many organizations and clinics that help with some of the costs associated with birth defects.

Medical services vary greatly from state to state, check with your local and state governments to determine what is available in your area. One note of caution: Because awareness about child abuse is rising, it is not uncommon for parents of children with Osteogenesis Imperfecta to be mistakenly suspected of this crime.

When you find it necessary to seek medical help away from your regular doctor, be prepared to answer questions about your child's condition calmly and with understanding.

A physician's primary concern is usually the overall welfare of the child, and knowledge of Osteogenesis Imperfecta is not as widespread as we all would like it to be. It is a good idea to carry a letter from your doctor with you at all times stating that your child has a diagnosis of OI and explaining what that means.

Many parents also carry a copy of this letter in the glove compartment of the car. When you travel, carrying copies of your child's medical records can alleviate many potential problems.