Crouzon syndrome

Treatment

Is there anything to be aware of at birth if someone is diagnosed with Crouzon syndrome?

There are some things to be aware of at birth if someone is diagnosed with Crouzon syndrome. Some babies cannot breathe out of their nose and will require a breathing tube. Some babies have extra fluid on their brain (hydrocephalus). If someone has hydrocephalus, pressure inside the skull (intracranial pressure) may increase and a tube (shunt) may need to be surgically placed to drain the extra fluid from the brain. Infants who have premature fusion of many skull bones (craniosynostosis) and a severe skull deformity may need surgery early in the first year of life.

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How is Crouzon syndrome treated?

What should I do after I have a diagnosis of Crouzon syndrome?

How is Crouzon syndrome treated?

There is currently no cure for Crouzon syndrome. However, many of the symptoms can be treated.

Treatment may include:

Surgery

There are a number of surgeries used to treat the symptoms of Crouzon syndrome. These include:

  • Craniectomy - Removal and replacement of portions of the skull. Done as early as possible after birth to prevent damage to the brain. It will also help to maintain a skull shape that is as normal as possible.
  • Surgery to treat protrusion of one or both eyeballs - Adjustments are made to the bones surrounding the eye sockets.
  • Surgery to treat protruding lower jaw - to normalize the appearance of the jaw.
  • Surgery to repair a cleft palate.

Orthodontic Treatment

Orthodontic treatment can help correct the alignment of teeth. It may include braces.

Eye and Ear Treatment

Specialists should monitor infants and children with Crouzon syndrome. They can check for eye and ear problems and treat them as necessary.

Supportive Treatment

Children with a mental deficiency or intellectual disability may need special education help.

What should I do after I have a diagnosis of Crouzon syndrome?

To help understand what treatments may be needed, your doctor may want to do some or all of the following tests.

  1. brain scans such as CT or MRI
  2. test to look for upper-airway blockages
  3. eye tests
  4. x-rays of the spine
  5. imaging of the digestive system
References

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