Crouzon Syndrome
Crouzon Syndrome is a hereditary condition. If a parent has Crouzon Syndrome, the chances that one or all of their children will have it are nearly 50%.
Conversely, if neither parent has the disorder, the chances that a child will be
born with this syndrome is low.
Children with Crouzon Syndrome have a number of characteristics, such as wide-set eyes
(hypertelorism), mid-facial deficiency, palettal anomalies, and air-way
obstructions.
5-10% of all Crouzon Syndrome cases will be Crouzon Syndrome AN (Acanthosis Nigricans). Children with this variation of Crouzon Syndrome will have dark, rough folds of skin – in the armpits, groin, etc.
The discoloration is generally noticeable between ages 2 and 4, and usually stops developing around age 12.
Extensive medical care is required for children with Crouzon Syndrome. Some important considerations are:
• Early detection of eye problems via vision therapy: This is an appropriate non-surgical treatment for amblyopia, or ‘lazy eye’. Vision therapy is used to correct eye movements and visual motor deficiencies. Therapy includes exercises that are designed to enhance the brain’s ability to control:A new surgical technique called Distraction Osteogenesis (craniofacial disjunction followed by gradual bone distraction and reshaping), helps to correct protruding eyes and assist in the functional and aesthetic improvement of the face without the need for bone grafting in children between 6 and 11 years of age. Distraction Osteogenesis can also be used on children less than 6 years of age, on a case-by-case basis. Early intervention is required for skull reshaping, eye protection and airway management.
a) Eye alignment
b) Eye tearing
c) Eye focusing abilities
d) Eye movements
e) Visual processing
Specialized computer and optical devices, including therapeutic lenses, prisms and filters help to develop visual motor skills.
• Relief of airway obstruction: Treatment depends on the diagnosis of the obstruction. In general, airway control is achieved through tracheotomy to intubation in severe cases.
• Close audiologic follow-up to detect hearing loss: Early diagnosis of Crouzon Syndrome is important, helping to prevent hearing disability.
• Speech management: Cleft palate affects speech and feeding in babies. Surgery is the primary treatment for cleft palate. During and after the feeding process, parents should help the baby burp, since babies with cleft palate tend to swallow more air while feeding. Speech therapy may be required through the growing years.
• Genetic Counseling: Genetic consultation is offered to parents of children with Crouzon Syndrome.
Cranofacial research focuses on developing cutting edge clinical diagnostics and therapies so that doctors can offer their patients the best possible treatment options.
For more information, please contact us at 1-800-344-4068 or info@craniofacial.net.