Managing KS

Managing KS

Receiving a diagnosis of Kabuki syndrome will initially bring a whirlwind of medical appointments to determine if there are any physical issues that require attention. During infancy, feeding challenges often become the priority. In addition, there may be cardiac or hip dislocation complications to resolve.

Hints for Parents

App Attack

Good apps for individuals with special needs can be hard to find - in particular, apps with simple menus to facilitate independence.  Find out which apps have passed the test! 


Stroller/Wheelchair Options

Although most individuals with Kabuki are ambulatory, there are a few who are not. Also, some individuals who are mobile may not have the endurance for long walks. As a result, some parents find it useful to own a stroller for their youth/adult children. Here are a few options that are used by our families.

Last updated: Tuesday, October 16, 2012 - 17:05

Kabuki Syndrome - Transition to Adulthood

An indepth look at developing and implementing a transition plan for our children.

Last updated: Monday, May 16, 2011 - 12:27

Role of a Clinical Geneticist

A clinical geneticist should be an integral part of the child's medical team.

Last updated: Wednesday, May 25, 2011 - 15:25

Medical Management Family Package

A family-friendly printable package of information.

Last updated: Saturday, June 4, 2011 - 16:54

Therapy Swing Options

A few ideas to incorporate therapy swings in your home.

Last updated: Friday, April 11, 2014 - 11:45

Bike Options

Numerous bike options.

Last updated: Saturday, September 19, 2015 - 21:00

Management of Kabuki Syndrome

Dyscerne, a European Network of Centers of Expertise for Dysmorphology have developed a Clinical Guideline for the Management of Kabuki Syndrome. It has been developed for profesionals and families to aid in the coordinated management of a multiple anomaly syndrome. The guideline includes "criteria for diagnosis, protocols for review and screening, and information on management at different life-stages."

Last updated: Friday, May 6, 2011 - 20:59

Educational Aids

Social story templates to aid in the introduction of your child to his classmates.

Last updated: Friday, May 6, 2011 - 19:11