Connect with a Community Support Network (CSN) at the National Fragile X Foundation.Contact the National Fragile X Foundation at 1-80 or get information about treatments, educational strategies, therapies and intervention.Remember that the choices of one family might not be best for another family, so it’s important that parents understand all options and discuss them with their child’s health care providers. Often, parents of children with special needs can give advice about good resources for these children. One parent might have learned how to address some of the same concerns another parent has. It might be helpful for parents of children with FXS to talk with one another. Having support and community resources can help increase confidence in managing FXS, enhance quality of life, and assist in meeting the needs of all family members. For information about services in your state, you can access your state’s parent center. These centers help families learn how and where to have their children evaluated and how to find services. When parents are concerned about a child’s development, it can be very challenging for them to figure out the right steps to take. Children can access some services even if they do not attend public school. Local public school systems can provide services and support for children age 3 years and older. Learn more about early intervention » What to do if you think your child might have FXS While early intervention is extremely important, treatment services at any age can be helpful. In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal diagnosis. Through this system, you can ask for an evaluation. These services are provided through an early intervention system in each state. Even if the child has not been diagnosed with FXS, they may be eligible for services. These services may improve a child’s development. Early Intervention ServicesĮarly intervention services help children from birth to 3 years old (36 months) learn important skills. Taking advantage of all the resources available will help guide success. To develop the best treatment plan, people with FXS, parents, and health care providers should work closely with one another, and with everyone involved in treatment and support-which may include teachers, childcare providers, coaches, therapists, and other family members. In addition, medicine can be used to help control some issues, such as behavior problems. Services can include therapy to learn to talk, walk, and interact with others. However, treatment services can help people learn important skills. Uncover the Facts: Fragile X Myth Busters for families and health professionals. So, anyone who is thinking about FXS testing should consider having genetic counseling prior to getting tested. However, the results of DNA tests can affect other family members and raise many issues. This allows the family and other caregivers to learn more about the disorder and manage care so that the child can reach his or her full potential. Testing also can be done to find changes in the FMR1 gene that can lead to fragile X-associated disorders.Ī diagnosis of FXS can be helpful to the family because it can provide a reason for a child’s intellectual disabilities and behavior problems. A doctor or genetic counselor can order the test. FXS can be diagnosed by testing a person’s DNA from a blood test.
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