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by Timothy S. Hartshorne
Children with CHARGE develop behavioral difficulties, some of which may be described as autistic-like, and obsessive-compulsive, with attention difficulties and tic disorders also present. There are potentially multiple sources for these difficulties, and research is attempting to sort them out. Multi-sensory impairments, communication frustrations, and physical pain and discomfort all have been implicated. However, some children with fairly good sensory abilities, adequate communication, and little apparent discomfort may still have challenging behavior. Cognitive impairment has been implicated in some but not all cases. It seems likely that some neuropsychological problems exist. Recent research supports the presence of executive dysfunction, or problems with shifting, initiating, inhibiting, or sustaining actions based on prefrontal cortex activity.
Another area being explored is the presence of a regulatory disorder making it difficult for the child to regulate complex processes such as their sleep-wake cycle, hunger-satiety cycle, their ability to console themselves, to manage their emotions, and to plan their motor activities. Recent research has found indications of significant sleep disorders in well over half of these children, which can have a significant impact on behavior. The presence of significant stress and perhaps Post-Traumatic Stress Disorder due to pain, illness, multiple surgeries, and difficulties experienced in school and sometimes at home is also being studied. Several researchers have found that the age the child first walks is a predictor for behavioral and communication difficulties. Most children with CHARGE walk by about 3 years of age, but those who walk later are at more risk for difficulties. The behavioral difficulties are frequently managed by medication, and a wide variety of drugs have been used. Children with CHARGE may have paradoxical reactions to medications, and frequently the drugs gradually lose their effectiveness. Well-developed behavioral interventions based on functional analysis of the behavior and involving functional communication training are important.
Timothy S. Hartshorne is a professor in the Department of Psychology at Central Michigan University.
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