The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The child can appear to be as healthy as other children. The manifestations are occurring internally, and although the symptoms are quantifiable and verifiable medically they often are not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination, and may vary in severity (wax and wane). Often patients will become more symptomatic after a stressor or activity. Patients may find themselves involuntarily limiting their life-style activities in order to compensate for the conditions. Symptoms can sometimes be so severe that some children may require placement in homebound teaching programs for health impaired students; others will be able to attend school, often with modifications in their educational plans. The social isolation experienced by not being able to attend school or community activities is one of the hardest things for these children to deal with.
Since youth with dysautonomia are usually normal in appearance, it can be a hard condition for laypeople to understand. Even the general physician sometimes misses the clues leading to a proper diagnosis. The symptoms are often difficult for the young patient to verbalize and the conditions are not always promptly recognized. Traditionally, cardiologists and cardiac electrophysiologists can efficiently diagnose and treat dysautonomia children. Sometimes neurologists and other pediatric specialists get involved as well. Families often find themselves desperately traveling great distances to the few pediatric dysautonomia specialists throughout the country for a proper diagnosis and innovative treatment.
The financial burden placed upon these families is often significant. The emotional toll and heartache can be devastating for everyone involved. Such an overwhelming illness has a rippling effect on the entire family. Chronic illness counseling is often recommended to help the patients and their families deal with the impact of the conditions on their lives. |
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