|
by Sara Rosenfeld-Johnson
Feeding problems are common in individuals with CHARGE syndrome; the causes and severity of the feeding difficulties vary greatly. The most severe of the disorders is, as the medical diagnosis states, "dysphagia: not approved for oral feedings." In this case the child could not receive any liquids or foods by mouth. Swallow studies of individuals with this diagnosis have identified physiological deficits in the swallowing mechanism. Thus, food or liquid intake can result in choking, gagging, and/or food aspiration. These individuals cannot receive food or liquid by mouth until medical approval is given.
The medical diagnosis for the second group is "dysphagia: approved for only specified food or liquid textures." Swallow studies have identified, based on the physiological deficits in the swallowing mechanism, safe and unsafe food and liquid textures. These individuals will have a diet prescribed by a speech-language pathologist trained in feeding and swallowing therapy. Changes in food textures cannot be implemented without direct communication with the physician.
The third group consists of individuals with muscle deficits secondary to weakness and/or motor-planning disorders. The swallow mechanism is intact in this group, but the preparation of the bolus for swallowing is impaired. Weakness in the muscles of the jaw, lips and tongue is often seen.
There is an additional overlying problem seen in nearly all individuals with CHARGE syndrome: sensory deficits. A complete oral sensory examination will determine the presence of oral hyposensitivity, oral hypersensitivity, mixed oral sensitivity, or fluctuating oral sensitivity. Tactile defensiveness, a fear-response to the presence or placement of certain textures within the mouth, may be superimposed over any of these.
Sara Rosenfeld-Johnson is a speech-language pathologist and oral-motor specialist at TalkTools™/ Innovative Therapists International in Tucson, AZ.
|