Children with OI often need multiple health care providers. Once this team is assembled, parents can enhance the members' effectiveness by following the general guidelines outlined below. They then need to assess each team member's effectiveness. Reasons to make changes will be discussed. The chapter concludes with a list of resources to aid families and their health care team.
Assembling the Team Players
All children need a primary care physician whose job is to care for the whole child. He or she needs to address general pediatric issues and how OI affects the child's overall health, growth, and development. Although most children's needs can be met by a family physician, children with a chronic disorder may be better served by a pediatric specialist as their primary care physician. Ultimately, the best primary care physician is one who inspires trust, engenders confidence, and with whom parents can have a partnership in their child's care.
In addition to a primary care physician, a child with OI needs a specialist best equipped to deal with the specifics of OI. This physician may be an orthopedic surgeon, a geneticist, or an endocrinologist interested in metabolic bone disease. His or her role is to monitor the child's OI and recommend therapeutic intervention, whether it is surgical or medical.
All children with OI benefit from a physical therapy program. This may be directed by the primary care physician, an orthopedist, or a physiatrist-a physician who specializes in physical medicine and rehabilitation. The team should include both physical therapists and occupational therapists. The physical therapist's focus is to strengthen muscle groups and improve function. The occupational therapist's role is to help the child better accomplish the tasks of daily living. Together, this team will determine needs and prescribe appropriate assistive devices such as braces, walkers, wheelchairs, etc. Aquatic therapy as an adjunct to this program can be of immense benefit in improving mobility and function in a buoyant, gravity-free environment. Success in the pool can lead to similar accomplishments on land.
Because of the possibility of hearing loss, children with OI should have their hearing tested regularly by the primary care physician. If an impairment is suspected, a licensed audiologist should do a complete hearing evaluation. Audiologists with experience working with children are preferable.
Children with dentinogenesis imperfecta (DI), a related condition to OI characterized by fragile, discolored teeth, need a pediatric dentist. Even children without DI need close dental follow-up with careful orthodontic evaluation to monitor growth of the upper jaw and maintain proper occlusion (teeth are properly aligned when child bites down).
What Doctors Need from Parents
To provide optimum care, a physician needs certain things from his or her patients and families. First and foremost, an accurate history is imperative. Parents should keep a detailed medical diary or log. Dates for developmental milestones, immunizations, fractures, surgeries, and other procedures are extremely helpful. Include any medications, allergies, reactions, or complications. Include a brief family history. If the log is quite lengthy, a one-page summary is a helpful refresher to remind the doctor of the child's course. Next, the physician needs specific information about OI. For example, the OI Foundation publishes Osteogenesis Imperfecta: A Medical Manual (Wacaster 1996). Any new medical information parents acquire concerning OI should be passed along. Before an office visit, make a list of questions to be answered, and ask them in the order of importance. NEVER LEAVE THE MOST IMPORTANT CONCERN FOR LAST. The physician may not appreciate its importance, and it may not receive adequate attention. Finally, follow through with the doctor's instructions. Busy physicians may not have time to monitor progress between visits.
What Parents Need from Their Doctor
There are several things parents must have from their doctor for a successful relationship. First of all, the relationship must be a partnership. Parents of children with chronic disorders rapidly become quite knowledgeable. Parents know their child better than anyone else and are expert in his or her day-to-day care and handling. Because of the enormous investment parents have in their child's well-being, they often become extremely up to date on medical advancements. Physicians must give parents credit for knowing their child and the child's disease. Age notwithstanding, the child should also be a partner in his or her care. Even very young children should be spoken to directly and included in medical discussions. A physician must be willing to participate in this partnership, and network with the other providers involved in the child's care. Ultimately the parent becomes the coordinator of care, often in conjunction with the primary care physician.
Due to the frequency of fractures, families need a plan for emergencies and other after-hours concerns requiring immediate attention. This plan MUST be worked out ahead of time. Know where to take the child if he or she needs immediate attention and how to reach the doctor.
An interview with a prospective physician is often enlightening and can help parents choose someone eager to work with them and their child. Lists of providers with special interest in OI are available from the OI Foundation.
This information is based on a chapter on the "Growing Up with OI" book set,
brought to you by the Osteogenesis Imperfecta Founation.
For more informaiton, contact:
The Osteogenesis Imperfecta Foundation, Inc.
804 West Diamond Ave., Suite 210
Gaithersburg, MD 20878
Phone: (301) 947-0083 or (800) 981-2663
Fax: (301) 947-0456
E-mail: bonelink@oif.org
Web site: http://www.oif.org
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