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. You can keep an eye out for
scoliosis by having your child stand in front of you, facing away from you,
and then have him or her touch their toes - this will make any irregularities
in the spine more obvious.. If there is any doubt, have your
child examined by a physician. 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 ("drop
episodes") 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. Bone degeneration may be alleviated or
onset forestalled by a high-protein diet - research in this area is still
ongoing.
