Diagnosis is based primarily on symptoms, but research is leading to diagnostic procedures and eventually genetic testing. The medical literature reports a wide-range of scenarios for the MSS patient. The variation is probably due to a combination of individual differences, increased availability of early intervention and educational opportunities sinces the 1960s, and uncertainty in diagnosis. Most patients continue to use walkers and crutches for mobility. There are some reports of increasing weakness with age which may require use of a wheelchair.
Cognitive function ranges anywhere from moderate retardation to near-normal.
Here are some growth profiles for children with MSS and how they compare with the average child. Selection of a supportive team of doctors, therapists, and educators who communicate well with the family can significantly affect outcome. Learn as much as possible about the disorder and communicate with others.