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Notice: This site is no longer being actively maintained. While much of the information is still relevant, some of it has become out-of-date.

There are several Facebook groups. Just search "Kabuki syndrome" from within Facebook.

For a current site see one of the following:

http://allthingskabuki.org
https://www.kabukisyndromefoundation.org

GastroIntestinal

Summary

Gastroesophageal refluxⁱ is prevalent in young children with Kabuki Syndrome, hindering the child's health, apetite and growth. Undiagnosed diarrhea and/or constipation is commonly reported. It is suspected that hypotonia may be a contributing factor.

Hints for Parents

Stability for Disability

Many parents use rolled towels to support their child with low tone in the high chair. You may also be interested in a chair harness!