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dulaney alumni
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| Legg Perthes Support Group, International Homepage |
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| Legg Calve Perthes Disease, International division of the National Osteonecrosis Foundation a support group for families with children diagnosed with Legg-Perthes disease. Definition: Legg-Calve-Perthes Disease (LCPD) is one of a group of disorders known as the Osteochondroses. The Osteochondroses typically are characterized by degeneration (avascular necrosis) and subsequent regeneration of the growing end of a bone (epiphyses). In Legg-Calve-Perthes Disease, the growing end (epiphysis) of the upper portion (capital) of the thigh bone (femur) is affected. Researchers believe that an unexplained interruption of the blood supply (ischemia) to the capital femoral epiphysis results in degeneration (avascular necrosis) and deformity of the thigh bone in this area. Symptoms may include a limp with or without pain in the hip, knee, thigh, and/or groin; muscle spasms; delayed maturation of the femur (delayed bone age); mild short stature; and/or limited movements of the affected hip. The disease process seems to be self-limiting as new blood supplies are established (revascularization) and new healthy bone forms (reossifies) in the affected area. Most cases of Legg-Calve-Perthes Disease occur randomly for no apparent reason (sporadically). Other cases are thought to be inherited as an autosomal dominant genetic trait. (from the National Organization for Rare Disorders, Inc.) In layman's terms: Legg-Perthes affects mostly boys (85%) between the ages of 4 and 12. The disease usually is unilateral (only one leg), but can be bilateral (up to 12%). What we know is, that for some unknown reason, the blood in the femoral artery begins to congeal or just stop flowing. When this occurs, the ball of the hip dies. As it dies, it becomes brittle and eventually the dead part of the bone is reabsorbed into the body. Then, there is revascularization, when the blood begins to flow again and the bone rebuilds itself. The disease takes 3 to 4 years to run its course and at this time, there is no cure. The younger the child is when this happens, the softer the bone is. As it regrows and reshapes, that softer bone can shape more easily. If the child is older or has the disease bilaterally (first in one leg, then the other) the bone has become harder and reshaping is not as easy. What to do: First, if your child begins limping or expresses pain in the knee or thigh area and has not had a recent injury, take him to an orthopedist and have x-rays done on the knee and hip area. An x-ray can immediately tell you if Legg-Perthes is the problem. Once Legg-Perthes has been determined, your doctor will prescribe a course of action. For some, it may be just watching the illness. For others who have more severe cases, other medical procedures may be called for. That may be in the form of braces, casts, physical therapy or surgery. By now you may be feeling very upset at the prospects of your child's future, but let me share with you my story and perhaps it will help. Background: We are the Kelly family. My husband and I began noticing our younger son, James, when he was almost 7, was limping. He complained of knee pain, but could not really tell us where. He had not hurt himself playing. We took him to our orthopedist and he did x-rays. Immediately, he could see the ball of James' right hip starting to flatten out. We were sent to A. I. duPont Institute, one of the leaders in Pediatric Orthopedics. There we were told James had already had the disease in the other leg, but because he was much younger, he did not have any symptoms and it did not do much damage to the left hip. At that point, James was not having too much discomfort and the doctor decided to wait and watch. This is a normal first step in treatment. One month later, after returning from vacation, James began limping more and then could not even bear to walk. Four days later he got his first petrie cast. A petrie cast looks like a giant A. It goes from the top of both legs down to the toe (toes pointed in) and a bar going across to hold the legs about 3 feet wide. We had looked at different ways of treating him, but our doctor explained that braces would have to be worn for about 2 years, traction lays them up in bed for long periods of time and casts give the same good results, but are for shorter periods and the child has a more normal childhood. James wore his casts for 7 weeks. I learned how to make pants fit his casts where you hardly noticed them. Meanwhile, James was wheeling around, sliding around, climbing around. Nothing seemed to stop him. More than once I found him on the top bunk of his bed. (Don't ask me how he got there-I have no idea!) We home schooled at the time and found that wheelchair time is FIELD TRIP TIME! We had a blast! We went to the top of the Empire State Building. They treated us like royalty and took us to the front of every line. We went to family reunions and had water balloon fights. We kept life as normal as possible. When James came out of his first set of casts, he was extremely stiff and could not walk much. I signed him up for the arthritis swim class at our local YMCA. I didn't know it at the time, but this was the best thing we ever did. Their instructors are certified and they worked with James one-on-one. We lowered him into the pool with a hoist and quickly he got his movement back. He had a great time and the older folks loved him to death. James thought it was great because they waived the over 18 rule for the hot tub. Besides the swim class, I also was given exercises by our physical therapist at A. I. duPont. These I did several times a day, unless it was swim day. I cannot stress how important exercise is to your child. This helps keep the ball of the hip as round as possible, which in turn, keeps your child's range of motion greater. The less they do, the stiffer they get. If your child baulks, remind them that there is good pain and there is bad pain. Good pain comes from slight pressure stretching the muscles. Bad pain comes from stiffness and an inability for the hip to move-it hurts much more and can be lasting. January of 1995 found us in our second set of casts. This time we went tobogganing! We wrapped his casts in plastic and then some old ski pants I redid to fit him. His dad's boots fit over his feet. The only problem was trying to drag this heavy kid up the hill! We had more fun that day and none of us will ever forget it. This set of casts had to come off a week early because he had dragged the heels right off. To this day our doctor laughs when he sees James because of all of his antics. We went back to the swim classes and for almost a year things were quiet. December of 1995 came and with it came alot of stiffness and pain. The ball was growing back after completely disintegrating. We set up surgery for March 15, 1996. The process would be to take small strips of bone from James' pelvis, along with donor bone to build a cage around the outside of the hip socket. This would help the bone become as round as possible. The doctor would also release the atrophied thigh muscle off the bone. It would eventually grow back elongated to give greater flexibility. (This same process is used successfully in heel spur operations, as well as many others.) As soon as the surgery was over, James was immediately put into a body cast from under the armpits down to his toes (with the petrie position). This time he got a fancy hospital bed for his room that he could do chin-ups on. Once again, it was field trip time and we went as much as we could. After 6 weeks, the cast came off and James was determined to walk out of the hospital. The doctor told us that alot of times kids get very lightheaded because all of the weight is gone and they usually pass out. Instead, James went into the therapy pool at the hospital and walked out on crutches. What an exciting day! Epilogue: Since April of 1996, James has had a great recovery. He plays sports, roller blades, rides his bike like a maniac and generally loves life. He is 18, an Eagle Scout, and getting ready to attend college. He shows no outward physical signs of having had the disease. One of the things that I have believed from the first moment of discovering the disease in our child is that no situation, no circumstance, no suffering is without a purpose. For us, I believe that purpose is to share help and ideas on how to help your child. I am not a doctor and don't pretend to know everything. But I can share with you the research I have done for the past eleven years in this area. I can also give you a forum to talk with other parents facing the same situation as you. I also will have links that will put you in touch with other web sites related to Legg-Perthes. If you have any questions or comments or have information that I have not found, please contact me at reidweaver@yahoo.com. Our support group is full of wonderful families just like yours, who are willing to share their experiences and encouragement. We have lots of medical links pointing you to information to help you feel comfortable in the decisions you may be making in the months ahead. We also have an online chat on Thursday nights at 8 p.m. where moms and dads can meet other parents. You are not alone in this!
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