- Patient Comments: Fragile X Syndrome - Experience
- Patient Comments: Fragile X Syndrome - Carrier
- Patient Comments: Fragile X Syndrome - Educational Options
- Fragile X syndrome facts*
- What is Fragile X syndrome?
- What causes Fragile X syndrome?
- What keeps the FMR1 gene from producing FMRP in Fragile X syndrome?
- Human cells 101
- How many people are affected by Fragile X syndrome?
- How is Fragile X syndrome inherited?
- What are the signs and symptoms of Fragile X syndrome?
- Intelligence and learning
- Social and emotional
- Speech and language
- Is there a cure for Fragile X syndrome?
- Are there treatments for Fragile X syndrome?
- Educational options
- Therapeutic options
- Medication options
- What are the options for adults who have Fragile X syndrome?
- What should I do if I find out someone in my family has Fragile X syndrome?
- What is being done to develop treatments or a cure for Fragile X syndrome?
- Where can I go for more information about Fragile X syndrome?
Is there a cure for Fragile X syndrome?
Although research continues and knowledge about Fragile X and its characteristics grows, there is no cure for Fragile X at this time.
Are there treatments for Fragile X syndrome?
Currently there is no definitive, single treatment for Fragile X. However, there are a variety of ways to help minimize the symptoms of the condition. Children with Fragile X who receive appropriate education, behavioral or physical therapy, and medication have the best chance of using their individual capabilities and skills. Even those with significant mental retardation can learn to master many self-help skills.
One important factor in developing a child's long-term potential is early intervention. The sooner a child begins to get help, the more opportunity for learning. Because a young child's brain is still forming, early intervention gives children the best start possible and the best chance of developing their full potential. Even so, no matter when a person is diagnosed with Fragile X, it's never too late to benefit from treatment.
Some treatment options include:
- Educational options
- Therapeutic options
- Medication options
Most children with Fragile X, including those with severe mental retardation, are guaranteed free, appropriate public education under federal law. Public Law 105-17: The Individuals with Disabilities Education Act-IDEA (1997) makes it possible for children with disabilities to get free educational services and educational devices to help them learn as much as they can. Each child is entitled to these services from age three through high school, or until age 21, whichever comes first. Also, every state operates an early intervention program for children from birth to age three; children with Fragile X should qualify for these services. The law also states that children must be taught in the least restrictive environment, appropriate for that individual child. This statement does not mean that each child will be placed in a regular classroom, but instead, that the best combination of one-to-one tutoring, small group work, and regular classroom work will be arranged.
Because not all children or adolescents with Fragile X have mental impairment or special needs, a medical diagnosis of Fragile X does not guarantee access to special education services. The child must have certain cognitive or learning deficits. Parents can contact a local school principal or special education coordinator to learn how to have their child examined to see if he or she qualifies for services under the IDEA.
If a child qualifies for special services, a team of people, including the child's parents or caregivers, teachers, school psychologist, and other child development specialists, will work together to design an Individualized Education Plan (IEP) for the child. The IEP includes specific learning goals for that child, based on his or her needs and capabilities. The team also decides how best to carry out the IEP, such as making choices about classroom placement for the child, determining any devices or special assistance the child needs, and identifying the developmental specialists who will work with the child.
A child with Fragile X should be evaluated and re-evaluated on a regular basis by his or her special services team. In this way, the team can determine how the child is doing and whether any changes are needed in his or her treatment (for instance, changes to the IEP, changes in classroom placement, or changes in other services) to ensure the child is getting the best possible care.
In general, there are three classroom placement options for a child with Fragile X, based on his or her specific abilities and needs:
- Full inclusion in a regular classroom. The child spends the full day in the regular classroom rather than just among children with special needs. This situation is sometimes called "mainstreaming." Specialists work with the child in the classroom, with other students present. There may be an aide assigned to help the child with certain kinds of tasks.
- Inclusion with "pull-out" services. In this type of placement, the child spends most of the day in the regular classroom. However, for part of the day, he or she attends small-group classes with one or more developmental specialists, such as a speech-language therapist or a physical therapist. This arrangement gives the child exposure to children who do not have special needs, as well as more individual attention to his or her areas of special needs
- Full-time, special education classroom. Some children with Fragile X may do better in a smaller special education class than in a regular classroom. Special education classrooms usually have fewer children and offer more individualized attention from the teacher. Such programs may be offered at the school or in central locations that serve a larger area. Regional special education centers often have facilities and equipment designed for children with special needs. For some children, a special school for children with similar disabilities may be the best option.
Placement decisions should be based on each child's needs and abilities. In most cases, these decisions require a balance of various priorities to maximize the chances for the best possible outcome for the child.