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There is no cure for Osteogenesis Imperfecta, so treatment focuses on reducing the number and frequency of fractures. Parents need to learn how to handle, position, and hold the child with Osteogenesis Imperfecta in ways that have the least possibility of causing fractures. Supportive shoes with arch supports are important, and leg braces may be helpful for the child learning to walk. Physical therapy can help keep joints mobile and strengthen muscles. In some cases bone surgery may be attempted, but this is difficult to accomplish because the bones are fragile.
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To date, the only treatment for OI is proper medical and orthopedic management of the symptoms. No cure is known, and no drug or vitamin therapy regimen has been uniformly satisfactory. Researchers continue to make progress with these issues. The most common means of managing severe deformity from repeated fractures of the long bones is through a procedure called “fragmentation, realignment and intra medullar rod fixation,” or “rodding.” Briefly, this procedure involves straightening the bone and inserting a steel rod through the length of the bone. This procedure is most commonly done in the legs and the arms as needed. Rodding not only corrects bowing (curving) of the bone, but adds an internal support that helps to prevent further fractures.
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The age of the child on which this operation is performed depends greatly on the size of the bones, but it is frequently done on children as young as two or three years old. When considering this option for your child, be sure to discuss the pros and cons of telescoping and non telescoping rods with your orthopedic surgeon. Keep in mind that rodding is a treatment that must be repeated as the child outgrows or rejects the rods.
Many people ask if there is a cure for Osteogenesis Imperfecta or at least the best possible treatment for broken bones. The answer to this question is no, there is yet to be a cure for the brittle bone disease. However, there are a few different types of treatment available for individuals who have OI. There is medication, surgery, physical and occupational therapy, and exercise. The main concern in the treatment of broken bones is pain management and making life easier for the patient. Doctors are also trying to come up with a way to minimize the amount of fractures an individual with fragile bones has in a lifetime.
The medication that is now being used on almost all individuals with this genetic disorder, for broken bone treatment and prevention is called Pamidronate. It is used to increase bone density. Pamidronate is administered through an IV. It is mixed with water like substance so that it doesn’t burn their veins. Many individuals get very sick the first time that it is administered to them. There are a few side effects of this particular type of medication such as the marbleizing of bones. If the bones receive too much Pamidronate at once, they harden too fast and the bone can start to feel like marble. When this happens the bones take longer to heal. The average OI individual heals from a fracture within three to six weeks, but with this medication it can take longer than a year depending on the severity of the break. This information has yet to be recorded as medical profession is denying that there are any side effects.
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Rodding surgery may be required for children with moderate to severe Osteogenesis Imperfecta to help treat and prevent broken bones. This surgery involves internal “splinting” of the long bones, (thigh, shin, and arms), by inserting a metal rod. The surgeons try to immobilize the bones as much as possible, otherwise the bone moves and bends and possibly breaks which can cause nerve damage. Sometimes the rod can come loose and has a possibility of coming through the skin. In another type of surgery, a wire is put into the bones instead of a rod. However, this is less effective in immobilizing the bone for broken bone treatment because the limb is still able to move, therefore, the fracture can and will rotate which could slow down the healing process even further if a person is not casted to fully immobilize the fractured limb.
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Another great broken bone treatment option are metal plates that surgeons can attach to the bone as a protector for the bone. The rod or the plate that is on or in the bone should not be felt. If it is felt, then something is wrong and additional surgery may be needed to provide the best and most successful outcome out of all broken bone treatments currently available.
There are two major types of rods that are put in the bone for broken bone treatment. The first one is called a non-expanding rod. This type of rod does not expand with the OI individual’s growth. The rod will need to be replaced every so often. If the bone starts to curve around the rod, then it is time to replace it. The OI individual will not always notice that this is what is happening, inside until a fracture occurs. They then get x-rays taken that show what is happening, not only to the bone, but also to the rod in an attempt to monitor this broken bone treatment option to determine success or not.
The other type of rod used to immobilize the bones, is called an expanding rod for broken bone treatment in children and adolescence. It can lengthen as the individual grows. The expanding rods do not have to be replaced as often as the non-expanding rod. The expanding rod is thicker than the non-expanding rod, therefore, it can only be used for longer bones that are strong enough for the rod to be anchored to either end. The rods can be made up to two different types of metals: stainless steel and titanium. Titanium has different properties than does stainless steel. Basically, the rod needs to be stiff enough to hold the bone in place, and not so stiff that it causes the bone to break. The surgeon will match the rod to the individual, depending on the quality of the bone and if he feels that this is the best broken bone treatment and fracture prevention.
Surgery recovery will depend on the patient. The more extensive the surgery, the longer recovery can take. Every individual will react differently to any method of broken bone treatment. The age and amount of activity that the patient does is a factor as well. The younger the patient is and the more activity that individual does, the faster they heal. The older they are and the less activity that they do, longer healing time is required, causing any method of broken bone treatment to not be as successful as it was for them in their younger years.
Physical therapy should begin as soon as it is known that an infant has muscle weakness or motor skill delay when compared with same-aged peers for post broken bone treatment to strengthen muscles in the fractured area. The long term goal for children with brittle bones is independence in all life functions (self-care, locomotion, recreation, social interaction, and education). Occupational therapy can help with fine motor skills and adaptive equipment for daily living. Adults with this disability also benefit from safe exercise to maintain bone and muscle mass. Swimming and water therapy are the best exercises for individuals with fragile bones as it allows independent movement with little risk of fracture to complete any method of broken bone treatment so the individual can regain their muscles and regain their independence.
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