What is rMED?
Treatment
There is currently no cure for multiple epiphyseal dysplasia, but much can be done to relieve symptoms, correct bone malformations, alleviate other complications and help to compensate for functional limitations. Joint pain can be helped with medication.
The treatment of multiple epiphyseal dysplasia is directed toward the specific symptoms that are apparent in each individual. Treatment may require the coordinated efforts of a team of specialists. Pediatricians, physicians who specialize in treating skeletal disorders (orthopedists or orthopedic surgeons), physical therapists, and other health care professionals may need to systematically and comprehensively plan an affected child's treatment.
Surgery may be necessary to treat malformation of the hip (osteotomy of the pelvis or the collum femoris) and, in some cases, malformation (e.g., genu varum or genu valgum) of the legs (osteotomy of the leg). Surgical procedures may be necessary to correct abnormalities of the knee. In some cases, total hip replacement may be necessary.
Elliot's Road
Most of 2013 was spent searching for answers. We helplessly watched as Elliot deterioated – running became impossible, walking became difficult, and eventually Elliot turned to crawling or "walking like a duck," with knees completely bent dragging the toes of his shoes with every step. He must now use a custom-fitted, motorized mobility scooter to maneuver through his school day and has his own transport chair for day-to-day outings and short trips to and from school, church, stores, etc. Elliot keeps his special cane closeby enabling him to "walk" a few slow steps when the scooter or transport chair are too cumbersome and when crawling or "duck-walking" isn't practical or possible.
In summer of 2013, soon after his 9th birthday, we were told surgery was the only option for Elliot to regain his mobility. After traveling hundreds of miles for 7 appointments to see 7 different specialists in 4 different states, we finally reached clarity on the real problem and the next step. This year, in spring 2014, we will travel to Missouri where Elliot will undergo his first surgery to correct a completely dislocated left kneecap. Dr. Dan Hoernshemeyer and Dr. Seth Sherman will perform the delicate surgery on Elliot's left leg. The right kneecap is subloxed (partially dislocated) and will need to be surgically corrected as well once Elliot is fully recovered from his first surgery. Hip problems, somewhat known since age 3-4, must then be addressed, most likely by subsequent surgeries.