Fragile X Syndrome : Cure, Therapeutic and Medication Options

by National Institute of Health

(Page 7 of 9)

Therapeutic options

A variety of professionals can help individuals with Fragile X and their families deal with symptoms of the disorder. Such assistance is usually most effective when provided by health care professionals experienced with Fragile X.

Speech-language therapists can help people with Fragile X to improve their pronunciation of words and sentences, slow down speech, and use language more effectively. They may set up social or problem-solving situations to help a child practice using language in meaningful ways. For the minority of children who fail to develop functional speech, this type of specialist may work with other specialists to design and teach nonverbal ways of communication. For example, some children may prefer to use small picture cards arranged on a key ring to express themselves; or they may learn to use a hand-held computer that is programmed to "say" words and phrases when a single key is pressed.

Occupational therapists help find ways to adjust tasks and conditions to match a person's needs and abilities. For example, this type of therapist might teach parents to swaddle or massage their baby who has Fragile X to calm him or her. Or the therapist might find a specially designed computer mouse and keyboard or a pencil that is easier for a child with poor motor control to grip. At the high school level, an occupational therapist can help a teenager with Fragile X identify a job, career, or skill that matches his or her interests and individual capabilities.

Physical therapists design activities and exercises to build motor control and to improve posture and balance. They can teach parents ways to exercise their baby's muscles. At school, a physical therapist may help a child who is easily over-stimulated or who avoids body contact to participate in sports and games with other children.

Behavioral therapists try to identify why a child acts in negative ways and then seek ways to prevent these distressing situations, and to teach the child to cope with the distress. This type of specialist also works with parents and teachers to find useful responses to desirable and undesirable behavior. During puberty, rising and changing hormone levels can cause adolescents to become more aggressive. A behavioral therapist can help a teenager recognize his or her intense emotions and teach healthy ways to calm down.

The services of these specialists may be available to pre-school and school-aged children, as well as to teens, through the local public school system. In a school setting, several specialists often work together to assess each child's particular strengths and weaknesses, and to plan a program that is specially tailored to meet the child's needs. These services are often free. More intense and individualized help is available through private clinics, but the family usually has to pay for private services, although some health insurance plans may help cover the cost.

Medication options

Currently, there is no medication that can cure Fragile X. Further, the Food and Drug Administration (FDA) has not approved any drugs specifically for the treatment of Fragile X or its causes. But, in many cases, medications have been used to treat many of the symptoms associated with Fragile X, as shown in the table on the next page. Please note that the NICHD does not endorse or support the use of any of these medications in treating symptoms of Fragile X syndrome, or for other conditions for which the medications are not FDA approved.

Medication is most effective when paired with therapy designed to teach new coping skills or behavior. Not every medication helps every child with behavioral symptoms related to Fragile X. Doctors usually prescribe these kinds of medications on a trial basis, to see if they help. If so, the doctor may need to adjust the dose to meet the needs of each child.

Some of these medications have serious risks involved with their use; others may make symptoms worse at first or may take several weeks to become effective. Doctors may have to try different dosages or different combinations of medications to find the most effective plan. Families, caregivers, and doctors need to work together to ensure that a medication is working, and that a medication plan is safe.

What are the options for adults who have Fragile X syndrome?

IDEA requires transition plans for moving from one phase of life to another, and the move from teenager to young adult to adult is no exception. The special services team, which can include family, teachers, a school psychologist, and other developmental specialists, makes the transition plan based on the individual's needs, interests, and skills. These plans may include vocational assessment and training, additional education, supported employment, and community participation. IDEA requires that the plan be in place by the time the individual is 16 years old. The plan will also consider the individual's level of independence to determine what type of living arrangements he or she might benefit from in the future.

As the teenager with Fragile X gets closer to finishing high school, or to his or her 21st birthday, the structure of his or her day may change to include work/study programs, job-related behavior training, and independent living classes. With the proper treatment and training, a young person with Fragile X may be able to live on his or her own, hold a job, and be an active member of his or her community.

About the Author

NIH is the nation's medical research agency - making important medical discoveries that improve health and save lives. The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the primary Federal agency for conducting and supporting medical research.