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Apert Syndrome

Apert Syndrome Treatments continued...

Other Apert syndrome treatments include:

  • Eyedrops during the day, with lubricating eye ointment at night. These drops can prevent the dangerous eye drying that can occur in Apert syndrome.
  • Continuous positive airway pressure (CPAP). A child with Apert syndrome and obstructive sleep apnea may wear a mask at night, attached to a small machine. The machine delivers pressure that keeps the child's airway open during sleep.
  • Antibiotics. Children with Apert syndrome are prone to ear and sinus infections caused by bacteria, requiring antibiotic therapy.
  • Surgical tracheostomy, or placement of a breathing tube in the neck. This surgery may be done for children with severe obstructive sleep apnea due to Apert syndrome.
  • Surgical placement of ear tubes (myringotomy), for children with repeated ear infections due to Apert syndrome.

Other surgeries may be beneficial for certain children with Apert syndrome, depending on their individual pattern of facial bone formation problems.

Apert Syndrome Prognosis

Children with Apert syndrome usually require surgery for release of the skull bones to allow a chance for the brain to develop normally. The older a child is before this surgery is performed, the lower the chance for reaching normal intellectual ability. Even with early surgery, certain brain structures may remain poorly developed, however.

In general, children who are raised by their parents have a better chance of achieving normal intellectual ability. About four in 10 children with Apert syndrome who are raised in a healthy family environment reach a normal intelligence quotient (IQ). Among Apert syndrome children who are institutionalized, only about one in 18 achieves a normal IQ. In one study, three of 136 children with Apert syndrome eventually attended college.

Children with Apert syndrome and other similar conditions who have normal IQs do not seem to have an increased risk of behavioral or emotional problems. However, they may require additional social and emotional support to help cope with their condition. Children with Apert syndrome with lower IQs often do have behavioral and emotional problems.

There can be wide variability between children with Apert syndrome, with some severely affected, and others only mildly affected. Experts are unsure why the same gene mutation can result in such variation in a child's Apert syndrome prognosis.

Life expectancy also varies between children with Apert syndrome. Those with Apert syndrome who survive past childhood and don't have heart problems likely have a normal or near-normal life expectancy. Life expectancy is likely improving because of advances in surgical techniques and follow-up care.

 

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WebMD Medical Reference

Reviewed by Roy Benaroch, MD on November 06, 2012

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