There is no “cure” for Coffin-Lowry Syndrome. However, specific symptoms, developmental delays and behaviors can be treated or addressed. A developmental evaluation should be done to determine if delays exist. Your physician can refer you to a center in your area serving developmentally disabled children, associations for intellectually disabled citizens, and in the special education departments of local school districts. […]
Note: The following information is based on Parents Perspectives Walking: Usually somewhere around 2-3 years. Many children have a more or less normal gait with mild coordination and balance issues. In some cases, walking may appear normal if unsteady for the first few years, and then somewhere between ages 4-7, the child’s gait may slowly change to a more wide-stanced gait, knees […]
There is wide variability in abilities and characteristics. Early intervention, physical and speech therapies plus the child’s own genetic makeup are all factors. Even among the severely affected, most will learn to speak and are able to be toilet trained. If sensorineural deafness is present, then expressive communication may still be possible through sign language.
Some aspects of the syndrome are progressive. Facial coarsening and skeletal involvement become more pronounced with age. Some motor and coordination neurological problems do not express themselves until later in childhood and may result in decreased mobility. Bone degeneration may occur starting in the late teen years which can lead to a higher incidence of broken bones. This is especially […]
The exact incidence is not known, but CLS is rare. Scientists estimate that it affects 1 in 50,000 to 1 in 100,000 births. [1]