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Fragile X Syndrome: Children
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Fragile X Syndrome is thought to be the most common inherited cause of learning difficulties. However many people have never heard of it and those who have, including many of the professionals who work with those affected by it, have little knowledge or understanding of the condition. This book brings up to date research with information and advice from teachers who are discovering, first hand, the best ways of educating children with Fragile X. It is much needed support and advice that will help teachers to understand the child with Fragile X and encourage maximum educational progress.
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Although there is currently no cure for fragile X syndrome, it can be treated through a combination of speech and language therapy, occupational therapy, physical therapy, and psychotherapy, depending upon the child's symptoms. Drugs may be used to treat behavioral problems, such as mood swings and aggressive outbursts. Your child's therapists can ... teach you techniques for reducing these problems. Anticonvulsants that are used to treat seizures can also help with behavioral problems. Generally, children with fragile X benefit from following a regular routine and avoiding over-stimulation. Try to keep distractions, such as noise and odors, to a minimum.
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Fragile X is the leading known cause of autism, accounting for 7-12 percent of all cases of autism. It is inherited and causes an underproduction of a protein critical for mental development. Fragile X affects about one out of every 4,000 boys and one out of every 8,000 girls making it more common than muscular dystrophy or cystic fibrosis. One in every 267 women is a carrier, and 70 percent of Fragile X children are born into families with no prior history of mental impairment. Fragile X ... results in mental impairment ranging from mild learning disabilities to severe mental retardation and can also include seizures, aggressive outbursts and severe anxiety.
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In addition to being anxious, males with Fragile X tend to be easily upset. They are easily overwhelmed with sights and sounds (see the What are the signs and symptoms of Fragile X?—Sensory section of this booklet for more information), and can become very distressed in a busy store or restaurant. Unexpected changes in routine, like entering a new class or classroom, can ... upset them. Some children respond by becoming extremely rigid or tense, while others whine or cry. At times, their reactions can spill over into tantrums or repetitive actions, such as rocking back and forth and biting themselves. In adolescence, changes, such as rising hormone levels, may make these outbursts more extreme.
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While many children with fragile X syndrome do not look different from their peers, some have subtle physical signs. These include a long narrow face, large ears, a high arched palate, flat feet, and overly flexible joints (especially the fingers). Some of these features do not become apparent until after puberty, when boys tend to develop enlarged testicles. Speech and language problems can include involuntary repetition of words or phrases, inability to move mentally from one idea to another, poor language content, and dropping of letters or syllables when speaking.
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The most prevalent behavioral characteristics of children with Fragile X are attention problems and hyperactivity, known as attention-deficit hyperactivity disorder (ADHD). ADHD is frequently treated with medication, generally central nervous system stimulants such as methylphenidate (Ritalin®), pemoline (Cylert®) and dextroamphetamine (Dexedrine®). Because these drugs have side effects that include irritability and poor appetite, alternatives such as amantadine and clonidine may be appropriate. Amantadine has been used with surprising success to treat hyperactivity and attention difficulties in children with low IQs, for whom stimulants are generally less effective.
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