Sotos syndrome is a disorder that results in increased growth during childhood, clumsiness, and delay in mental development.
Over time, many children with Sotos syndrome catch up in mental development. Physical growth eventually slows down. By puberty, most children with Sotos syndrome are similar in size to other children their age. Most children with this disorder grow up and lead normal lives.
CAUSES
The cause of Sotos syndrome is a mutation in a gene. The gene makes a protein that helps control growth. It is not known why this gene mutates. Sotos syndrome very rarely runs in families.
RISK FACTORS
SYMPTOMS
Symptoms of this condition can be physical or behavioral and developmental. Physical signs include:
• Larger than normal size at birth, with a head that is larger than normal.
• Yellowing of the skin (jaundice) in infancy.
• A long, narrow face, with a pointed chin.
• Greater height and weight than other children at a similar age.
• Curvatures of the spine (scoliosis).
• Widely spaced eyes. The outer corners may slant downward.
• Very large hands and feet.
• Clumsiness.
Behavioral and developmental symptoms may include:
• Delayed speech development.
• Mild learning disabilities.
• Impulsive behaviors that are difficult to control.
• Tantrums.
• Overactivity.
DIAGNOSIS
This condition is diagnosed based on your child’s symptoms, medical history, and a physical exam. Your child will also have tests, which may include:
• An X-ray of your child’s wrist. This is a way to check for increased bone growth for age.
• A blood test.
TREATMENT
There is no specific treatment for Sotos syndrome. However, the syndrome can be managed through treatment of certain effects of the syndrome. Management may include:
• Treatment for scoliosis.
• Speech therapy.
• Behavioral therapy.
HOME CARE INSTRUCTIONS
• Keep all follow-up visits as told by your child’s health care providers. This is important.
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