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! 

Articles

Transitioning to Adulthood Videos

Four videos that offer guidance to individuals, families and caregivers in the transition process from education to employment and from family home to independent living. Produced by the Nemours Children's Health System in Delaware, they were one of the recent recipients of the Impact Reward from Genetic Alliance.  As part of this award, two additional videos will be devoloped.

Last updated: Friday, May 30, 2014 - 08:31

Apps For Success

Good apps for individuals with special needs can be hard to find - in particular, apps with simple menus to facilitate independence.  Following is a list of apps which have passed the test! 

Last updated: Friday, February 21, 2014 - 19:29

Gidgets-n-Gadgets

Check out these items that help make life a bit easier.

Last updated: Friday, April 11, 2014 - 11:14

Personal Transition Accounts

Transitioning from childhood dependence to adulthood independence is something that all of us must eventually tackle. Included are stories from parents of young adults with Kabuki syndrome and some of those young adults themselves.

Last updated: Thursday, October 9, 2014 - 11:25

Kabuki Syndrome

A comprehensive summary of Kabuki Syndrome, including diagnosis, clinical description, differential diagnosis, management, genetic counseling, molecular genetics, and resources. Compiled and submitted to GeneReviews by Dr. Margaret Adam and Dr. Mark Hannibal from the University of Washington and Dr. Louanne Hudgins from Stanford University. It has been formatted by KSN into a handy pdf file for easy donwnload.

Last updated: Monday, November 21, 2011 - 13:44

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