How do I find a treatment team for Saethre-Chotzen Syndrome?
Your child’s pediatrician should be able to refer you to a team of doctors that specialize in the care of patients with diseases that affect the face and skull, like Saethre-Chotzen syndrome. This group of diseases is called craniofacial diseases, and a craniofacial team is made up of doctors who are trained in caring for patients with such conditions.
The Cleft Palate Foundation’s website (http://www.cleftline.org/) has a state-by-state list of craniofacial teams. In most states, there are teams available in multiple different regions. The American Society of Medical Geneticists website also has a regional listing of genetics clinics that may be helpful in diagnosing your child’s condition and helping you find a craniofacial team in your area.
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What specialist doctors should we see if my child has Saethre-Chotzen Syndrome?
Care for individuals with Saethre-Chotzen is best done by a multidisciplinary team of doctors and specialists. This means that many different kinds of medical professionals are involved in your child’s care. Your child might not need care from all of these different specialists, but the team is able to coordinate care throughout your child’s life. A team that specializes in diseases of the head and face is called a craniofacial team, and can contain:
- an audiologist for your child’s hearing
- a surgeon
- a dentist or orthodontist for your child’s teeth and jaws
- a geneticist or genetic counselor who can help to properly diagnose Saethre-Chotzen based on genetic information
- a nurse
- an ear nose and throat doctor
- a social worker to help support the family
- a speech therapist to help with feeding and speech problems
- and other specialists
If my child has Saethre-Chotzen Syndrome, do I still need to have a regular pediatrician?
Your child’s pediatrician is a very important part of the healthcare team. The pediatrician may notice certain physical symptoms of Saethre-Chotzen syndrome, such as a differently shaped skull and slight ear or hairline changes soon after birth, and can often help to refer you to the correct team of physicians for diagnosing and treating your child’s condition.
Once your son or daughter has a genetic diagnosis, it is very important that you make your pediatrician aware of the diagnosis. This will allow the pediatrician to consider new symptoms in the context of Saethre-Chotzen syndrome. For example, if a child without Saethre-Chotzen has a headache, this may be interpreted differently than if a child with Saethre-Chotzen has a headache.
On the other hand, however, your child with Saethre-Chotzen is still a child, who will have a lot of the same sicknesses as his or her peers, such as a common cold. The right pediatrician will also realize that not every healthcare need your child has is necessarily related to this disease.
How can I find a genetic counselor to learn more about Saethre-Chotzen?
The National Society of Genetic Counselors (NSGC) is the professional organization for genetic counselors in the United States. Their website (http://nsgc.org/) is a great resource for locating genetic counselors in your region. Genetic counselors are specialists in speaking with families and helping them understand genetic conditions, and will be able to answer many of your questions about Saethre-Chotzen syndrome.