FEEDING

Of the nearly 100 genetic articles published on Kabuki, many mention that children have feeding problems but none are soley dedicated to this specific issue. As far as KSN knows, there are no studies done yet on feeding issues.

However, through this network we have learned of many children with feeding difficulties. Our own daughter, now 11 years old, had feeding problems in that she found suckling, swallowing and breathing difficult to coordinate. She gains weight very slowly. But it was not until we began to correspond with others that we found out the extent to which other children have problems. Quite a number are fed via g-tube for the first few years of their life for varying reasons, usually because of low weight gain or reflux problems. However, most are introduced to foods around 2-4 years old and eventually the tube and button is removed. Many receive 'oral therapy' during the years they have the tube to remind the mouth to swallow, etc. Most, however, do not need feeding tubes, despite the fact they do not gain weight at the usual rate.

Many children with Kabuki have sensory issues, including tactile defensiveness to certain textures of foods. Many, even those not previously fed by g-tube, are extremely picky eaters - selecting only a very few foods at a time. But almost all greatly improve their eating habits by the time they are around 10 years old. Most children will gradually try new foods and textures.

It's not known why so many children have problems with gagging and choking. Is it a sensory issue - they don't like the texture of the food? Is it a low muscle tone issue - the muscles needed to chew and swallow don't work as efficiently? Is it a gastric issue - the stomach doesn't keep the food down? It's not really known yet. But it is becoming evident by the many letters from parents that most children outgrow these issues.