If your child has been diagnosed with Rett Syndrome, you may be feeling overwhelmed and unsure of where to turn for help. Fortunately, there are a number of services available in Fairhope, Alabama that can provide you and your family with the support and resources you need. As an expert in the field of Rett Syndrome, I understand the difficulty of navigating the diagnosis and treatment process. That's why I'm here to provide you with the information and resources you need to get the right support for your child.
The first step is to contact a family empowerment representative. These volunteers are specially trained to provide emotional support, information, and resources to families affected by Rett Syndrome. They can help you understand the diagnosis and provide guidance on how to best care for your child. The Alabama State Department of Education Transition Services, the Alabama Department of Senior Services, and the Alabama Disability Advocacy Program are all great sources of information on transition services and laws.
Additionally, the Kennedy Krieger Rett Syndrome and Related Disorders Clinic offers specialized diagnostic and treatment services for children, adolescents, and adults with Rett Syndrome and associated disorders. If your child's healthcare provider suspects Rett Syndrome after the evaluation, genetic testing (DNA analysis) may be necessary to confirm the diagnosis. Because Rett Syndrome is rare, your child may have certain tests done to determine if other conditions are causing some of the same symptoms as Rett Syndrome. The Alabama Disability Defense Program (ADAP) provides legal services to Alabamans with disabilities to protect, promote, and expand their rights.
Visit their website or call 1-205-348-4928 for more information. The Alabama Early Intervention System (EIS) serves children from birth to 36 months of age who have a medical diagnosis that may delay development. Visit their website or call 1-800-543-3098 for more information. Children and adults with Rett Syndrome need help with most daily tasks, such as eating, walking, and going to the bathroom. The Kennedy Krieger Institute is one of the few healthcare providers in the Mid-Atlantic that diagnoses and treats this syndrome.
They also offer studies and trials to advance the treatment and knowledge of Rett Syndrome. Diagnosing Rett Syndrome involves carefully watching your child's growth and development and answering questions about medical and family history. The guidelines for diagnosing atypical Rett Syndrome may vary slightly, but the symptoms are the same, with varying degrees of severity. As an expert in Rett Syndrome, I understand how difficult it can be to navigate this diagnosis and treatment process. That's why I'm here to provide you with all the information and resources you need to get the right support for your child in Fairhope, Alabama.