Feeding Therapy Summary

Individuals with Kabuki Syndrome often have varying degrees of feeding difficulty. Structural differences such as cleft palatei or dental problems can contribute to feeding problems.  Cardiac defects and low muscle tone can make eating exhausting and difficult to coordinate Cardiac defects and low muscle tone can make eating exhausting and difficult to coordinate. The high incidence of gastrointestinal problems, including gastroesophogeal refluxi, constipation, diarrhea and other problems with the GI tract can make eating a painful experience. Finally, developmental delay can also make learning to eat very challenging.

Esponda_8Eating is a complex process and involves the integration of various systems, including sensory and oral-motor. Infants often struggle with the coordination of sucking, swallowing and breathing. A significant amount of infants suffer from gastroesopageal reflux, which will add to the feeding difficulties. Published studies have found that aproximately 17% of infants require a gastrostomy tube placement for up to 7 years of age. The young child may have difficulty with the process of biting, chewing and swallowing which may lead to excessive gagging, vomitting and/or food refusal. Previous gastro-tube placement will increase these problems. In addition, many children with Kabuki Syndrome have sensory issues that interfere with eating. Smells, textures and temperatures of food may contribute to aversions.

The overall goal of feeding therapy is to help children have a positive mealtime experience, while eating sufficiently and efficiently. Feeding therapy is usually administered by either an Occupational Therapist or a Speech Language Pathologist and can be customized to the individual child's individual needs. Many feeding therapy approaches exist to address a variety of feeding issues and can take place in a clinic/hospital setting, in the home, or at a multi-week intensive outpatient program.

Addressing feeding issues usually requires a multidisplinary approach that can involve not only the feeding therapist, but a pediatrician or nutritionist/dietician (to ensure caloric/nutrient needs are met), and other medical specialists (i.e. gastroenterologist, cardiologist, ENT, endocrinologist, etc.) to address underlying issues that may be causing the feeding problems.

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