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Frequently Asked Questions

Should I have my child evaluated for therapies?

Will my child need to attend a special school?

Are specialists required to care for my child?

Are Medical Problems common?

Early intervention is key. Developmental testing should be completed to learn which therapies are needed and children should be enrolled in early intervention programs where available. Most individuals with KBG Syndrome receive occupational, speech and physical therapy.

You do not need a specialist to help with the general care of your child. However some individuals with KBGS have complex needs that require the help of many health and educational specialists.

KBG Syndrome occurs spontaneously in most cases and the odds of another spontaneous case occuring are extremely rare. Unless a parent is also affected the chances would be very rare. If a parent has KBG Syndrome there is a 50% chance another child may be affected.

Children with KBG syndrome DO NOT necessarily require a special school. Some families elect to have their children attend private schools specializing in education for students with cognitive challenges, others choose charter schools or religiously based programs, and a percentage are home-schooled. The most widely attended schools, however, are community public schools. Success can be achieved at each of these program types as long as the staff makes the proper accommodations to help the student learn. Many students do require a 504 or IEP.

There is a wide range of abilities among individuals with KBG syndrome. Some may never possess the ability to live unassisted while others may attend secondary schools and/or work successfully. In fact many individuals only find out they have KBG Syndrome after a child is later diagnosed. Fortunately, there are also a growing number of transition and post-secondary options for individuals with differing abilities. This helps to make college or college-like programming possible for many who would otherwise be unable to attend. The level of support available for students varies among the programs. Many programs focusing on independent living skills, practical academics (such as check balancing and money management), social development and vocational preparation rather than traditional academics also provide a college-like experience.

Yes. However the number of medical issues and their severity can vary greatly from person to person. Many different body systems can be affected and issues can come up over time. It is therefore important that individuals with KBG Syndrome receive ongoing medical monitoring and treatment. Despite the possibilities of medical issues many individuals with KBG Syndrome are healthy and live active, full lives.

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