Crouzon syndrome

Healthcare/Doctors

Should people with Crouzon syndrome see any medical specialists?

People with Crouzon syndrome should see some medical specialists. They should see the following:

  1. Plastic surgeon (for craniosynostosis)
  2. Orthopedist (bone doctor)
  3. Otolaryngologist (ear, nose and throat doctor)
  4. Hearing specialist (audiologist)
  5. Neurologist
  6. Ophthalmologist (eye doctor)
  7. Neurosurgeon (if extra fluid on the brain is noted)
  8. Dentist and orthodontist
  9. Sleep specialist if sleep apnea or snoring are seen
  10. Early intervention (speech therapy, social support if needed)

In some areas of the United States, hospitals have a Craniofacial Team that includes many different specialists that help care for patients with Crouzon syndrome.

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If I have Crouzon syndrome, what should my primary care provider know about managing the disease?

Are there published guidelines for management and surveillance for Crouzon syndrome?

If I have Crouzon syndrome, what should my primary care provider know about managing the disease?

If you have Crouzon syndrome, your primary care provider should know the management and surveillance guidelines. Referrals to necessary specialists are typically needed early on, depending on the clinical features of the affected person. Some babies with Crouzon syndrome may have difficulty breathing through their nose and a breathing tube may be needed. A baby diagnosed with Crouzon syndrome should be seen by a plastic surgeon early on to discuss surgery. The primary care provider should look for signs of hydrocephalus (increased fluid on the brain) which can include a bulging "soft spot", crankiness, fatigue, and increasing head size. It will important for a person with Crouzon syndrome to have regular dental, hearing, and eye evaluations.

Are there published guidelines for management and surveillance for Crouzon syndrome?

There are published guidelines for management and surveillance for Crouzon syndrome on the website GeneReviews.

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