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 feeding issues, as related to Kabuki, have not yet been studied.
However, through this network we have learned of many children with feeding difficulties. Our own daughter, now 14 years old, had difficulty coordinating suckling, swallowing and breathing. She gained weight very slowly. But it was not until we began corresponding with others that we realized the extent to which many other children have problems. A fair number are fed via a gastric tube for the first few years 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 these years to remind the mouth of sensations, etc. Most children, 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. Even those not previously fed by g-tube, can be extremely picky eaters - selecting only a few foods at a time. Many improve their eating habits as they get older, usually around 10 years old. Most children will gradually try new foods and textures.
It's not known why so many children with Kabuki have problems with gagging and choking. Is it a sensory issue – the texture? 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?
Increasingly, we are hearing from parents that their children with Kabuki have sudden weight gains slightly before and/or during puberty.
According to the article,
Growth, behavior, and clinical findings in 27 patients with Kabuki (Niikawa-Kuroki) syndrome
Am J Med Genet. Jun 1;127A(2) pp. 118-27 2004 Authors: White SM, Thompson EM, Kidd A, Savarirayan R, Turner A, Amor D, Delatycki MB, Fahey M, Baxendale A, White S, Haan E, Gibson K, Halliday JL, Bankier A
the prevalence of overweightness for individuals with Kabuki in Australia and New Zealand is 57%. This is significantly higher than the 20-25% from the same age category from the general population.
Obesity is also mentioned in the article,
Long-term follow-up of three individuals with Kabuki syndrome
Am J Med Genet. Mar 1;125A(2) pp. 191-200 2004 Authors: Shalev SA, Clarke LA, Koehn D, Langlois S, Zackai EH, Hall JG, McDonald McGinn DM
Two of the three young male adults with Kabuki are reportedly obese.
It is still unclear as to whether the obesity has an endocrinological basis and is a specific characteristic of Kabuki or is a more general characteristic of developmental delay, thereby being possibly due to decreased activity levels and/or unhealthy selective eating habits.