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. If delays are noted, the child should be enrolled in an appropriate setting answering his specific needs. This often requires a “team approach” that includes physician, speech and language therapy, occupational therapy, physical therapy and vocational training. As with all children, early mental stimulation is important for brain development and especially so for children with CLS.

Your child should have regular medical examinations to watch his or her progress. Since you see your child every day, you may notice that something is different before your family doctor will.  In CLS, scoliosis may be present as early as birth or as late as the teenage years, with the average being early grade school years. Unexplained falls  may develop which are neurological in origin and may be controlled with various medications. Sleep apnea is common and if untreated, the chronic oxygen deprivation can cause cardiac problems and loss of cognitive function.  Fainting spells could be an indicator of a heart condition. If behavior problems occur, first rule out any underlying physical cause; for example, head banging may be an indication that the child is in discomfort from chronic ear infections.