Managing KS

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.

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

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

A family-friendly printable package of information.

A few ideas to incorporate therapy swings in your home.

Numerous bike options.

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."

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