Good and Bad Medical Care for Duchenne Muscular Dystrophy
Posted Sep 23 2012 3:04pm
It always hurts me to have a parent tell me that a son with Duchenne muscular dystrophy needed a wheelchair as early as nine or ten years of age. There is absolutely no excuse for this if a boy has had the proper medical care from the day he was first diagnosed. Unfortunately, in the U.S. today most physicians still are caring for these boys as they did in the 1950's or perhaps I should say not caring for them.
The first step whould be early diagnosis with a CPK blood test and a muscle biopsy, not from the calf muscle, and using a local anesthetic. A muscle biopsy should never be done in muscle disease patients with the use of a general anesthetic. This is because of the risk of death due to Malignant Hyperthermia, when halothane or succinylcholine anesthetics are used.
The next step should be heel cord surgery when a boy starts walking on his toes. Short leg braces or AFO's would be the next stop with agressive physical therapy soon after the heel cord surgery. Predisone medication should be started at an early age, as this has been shown to increase a boy's walking time. Other surgeries on the leg muscles may be necessary and night splints should be used when the feet start turning inward. Long leg braces may be needed at some point and a good orthotist or brace maker is important to find, as is a good pediatric orthopedist.
A stand table at school in the classroom helps the boys keep more muscle strength and active muscle stretching at home and with a physical therapist at school pays off royally. Swimming in a warm pool can make a real difference, as can anything that keeps a youth up and walking as long as possible.