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Freeman-Sheldon syndrome (FSS) is a multifaceted condition involving skeletal muscle tissue and tissue attached to muscle or affected muscle tension at all locations throughout the body. Because the syndrome varies, standards for care must be sufficiently broad to encompass each individual’s specific malformations and disabilities. Our group experiences show the need for some or all of these diagnostic or therapeutic interventions: |
- Surgical procedures to correct feeding dysfunction (such as gastrostomy) and breathing difficulties (tracheotomy).
- Speech therapy and/or dysphagia team intervention to correct pharyngeal dysfunction and/or feeding difficulties.
- Speech therapy for delayed and/or nasal speech.
- Communications boards for those unable to speak.
- Dental and oral prostheses to correct microstomia and/or hypoplastic mandible.
- Orthodontia.
- Plastic surgery to correct malformations of the face and hands.
- Orthopedic surgery to correct clubfeet, joint contractures and scoliosis.
- Braces and wheelchairs to aid mobility.
- Physical therapy.
- Occupational therapy.
- An ophthalmologist to correct strabismus and/or ptosis (eyelid droop).
- Auditory testing with possible need for hearing aids
- A neurologist to evaluate and manage any developmental delay which may occur.
- Genetic counseling.
- Psychological counseling to better cope with facial malformation and orthopedic disabilities.
- Early intervention programs.
- Special education programs as needed
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