For the child, there is seldom much coping that they have to do. Young people with this disorder might want to think about getting a specialist that can explain everything that is happening with their bodies. The type of physician that will more than likely be dealing with the child is an orthopaedic surgeon, a geneticist, or an endocrinologist who will offer everything from parenting tips to surgery options and treatment options.
Beyond parenting tips, the physician monitors the OI individual's recommended therapeutic intervention. This means monitoring all aspects of the patient's health, medication and surgical requirements.
The physician managing the therapeutic intervention of a fragile child must form a cooperative and collaborative partnership with the parents, because the parents of the child with a disability can become rapidly more knowledgeable than many specialists regarding their child's disease and the doctor needs to give the parents credit for their knowledge of their child's condition and how best to care for them. The more parenting tips and recommendations a parent has, the more success is available to the child.
If there is a previous history of OI in either the mother's or the father's family, you probably have some idea what to expect and how to manage the disease. You should be aware, however, that a child's symptoms and severity may differ from those of the parent with OI; that is, the child may not necessarily be affected in the same way that the father or mother was.
When you are not expecting your child to be born with a disability, it can be a terrible shock and may be very upsetting. Having a child with a disability such as OI can be very trying, and may not be something that you thought could ever happen. Don't be ashamed to cry or express your disappointment to friends and loved ones. 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 or looking for someone to blame, depression, and finally, acceptance.
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