Now that you have a diagnosis, there are several steps to help your child get the best care possible:

Don’t panic! You are not alone. Other families have gone through this before and are ready to help.

• Work with your child’s primary care physician (usually a pediatrician or family practitioner) to assemble a team of specialists to address your child’s symptoms and needs. These may include:

A craniofacial plastic surgeon (physician specializing in reconstruction of the face and skull)
A gastroenterologist (physician specializing in stomach and intestinal disorders)
A geneticist (physician specializing in genetics)
A neurologist (physician specializing in muscles and nerves)
An orthopedist (physician specializing in bones and joints)
A physiatrist (physician specializing in physical medicine and rehabilitation)

• Get informed and get connected

Join the Freeman-Sheldon Parent Support to learn from other parents who have already been there and can provide information and support

• Learn about the resources in your area:

The children’s hospital in your area
Shriners Hospitals
Talk to the hospital social worker about parent-to-parent groups in your area. While not Freeman-Sheldon syndrome specific, networking with parents in your area will give you information that cuts across disabilities.
Early intervention programs providing family support and training ( Canada and the United States).
Parent Training and Information Centers for information on special education in public schools (in the United States).

• Read

Use the Freeman-Sheldon syndrome bibliography to learn more about the disorder. Copies of some articles are available in Adobe Acrobat PDF form in the Member’s Only section for your personal use only. Contact us for access to this section of the website.