Bones Home > Coping With Osteogenesis Imperfecta
Coping with osteogenesis imperfecta may initially seem difficult. There are numerous factors to consider when dealing with osteogenesis imperfecta in the family, such as the type of support you should seek and whether your health insurance coverage is sufficient. Different healthcare professionals (such as rehabilitation specialists, physical and occupational therapists, as well as social workers) can assist your family by providing both support and help for your child in need.
When you are not expecting your child to be born with a disability, it can be a terrible shock and even a bit upsetting. Having a child with a disability such as osteogenesis imperfecta (OI) can initially be very trying and at times, challenging. As with any grieving process, you will most likely find yourself repeatedly going through stages such as refusal to believe there is a problem, anger and/or looking for someone to blame, depression, and, finally, acceptance. There are many excellent and helpful books available that deal with the birth of a child with a disability.
If there was a previous history of osteogenesis imperfecta in either the mother's or the father's family, you probably have some idea of what to expect and how to manage the disease. You should be aware, however, that a child's symptoms and severity of symptoms may differ from those of the parent with osteogenesis imperfecta; that is, the child may not necessarily be affected in the same way that the father or mother was.
Most psychiatrists agree that parents of children with disabilities will benefit from joining with other parents whose children have similar problems.
If you have not already done so, you should contact a pediatrician and an orthopedic surgeon. It will be worthwhile to find doctors whom you trust and with whom you will be able to work closely, preferably those with experience treating patients with osteogenesis imperfecta. 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.