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Medical Considerations

Note: Due to the variable presentation of individuals with KBG Syndrome not all of these will apply to every student. This is a general list to consider of medical issues that may be present, the impact on the student and the accommodations that may be utilized in a 504/IEP.

Information is not intended to replace professional medical advice.

Heart & Blood Vessels​

Medical Problems

  • Aortic root enlargement

  • Congenital Heart Conditions

  • Dysautonomia

Impact on Student:

  • Restrictions on lifting (backpacks, textbooks, boxes, etc.)

  • Fatigue

  • Medication regimen may require taking doses at various times throughout the day

Accommodations

  • Take all medical complaints seriously

  • Provide unlimited access to the nurse’s office

  • Adjust school schedule to allow for rest during the day while still meeting academic requirements

Bones & Muscles

Medical Problems

  •  Muscle issues (hypotonia or hypertonia)

  • Curved back

  • Flat feet

  • Loose and flexible joints

  • Pain (may be chronic)

Impact on Student:

  • ​May not be able to sit comfortably for long periods of time

  • Difficulty walking long distances

  • May not be able to participate in regular physical education or field day activities

  • Muscle fatigue

  • Severely affected students may require use of a wheelchair 

  • Difficulty with penmanship and/or writing for long periods of time

Accommodations

  • May need to provide a special desk/chair

  • Allow access to nurse for pain management

  • Handwriting modifications or use of other devices

  • Wheelchair accessibility if required

  • Modify Physical Education Requirements

Eyes

Medical Problems

  • strabismus (misalignment of the eyes)

  • near/far sightedness

  • Swollen optic nerves

Impact on Student

  • Difficulty reading for long periods of time

  • Difficulty seeing the chalk board/smart board/projection screen, etc

Accommodations:

  • Provide seating toward the front of the classroom

  • Provide computers with settings to accommodate visual disability

Lungs

Medical Problems

  • Asthma

  • Sleep Apnea

Impact on Student

  • May not be able to participate in regular physical education or field day activities

  • Needs access to Nurse station at at all times

  • Ability to carry inhalers on person or in close proximity

Nervous System

Medical Problems

  • Seizures

  • Headaches/Migraines

  • Hydrocephalus

  • Tremors

Impact on Student

  • May not be able to participate in regular physical education or field day activities

  • May have difficulty completing assignments on time

  • Needs access to emergency medications at all times

Accommodations

  • Provide access to nurse as needed

  • Allow for extended time to complete school work

  • Adjust school schedule to provide more free time for resting during the day without relaxing academic requirements

GI System

Medical Problems

  • Constipation

  • Feeding Difficulties including the occasional need for feeding tubes or TPN

  • Failure to Thrive

  • Reflux

  • Cyclic Vomiting Syndrome

  • Dysmotility

Impact on Student

  • May need extra time with nurse for feeds

  • May need extended lunch time or periods for snacks

  • May need alternative bathroom arrangements ​or accessibility

Accommodations

  • Provide access to nurse as needed for meds or feeds

  • Allow for alternative lunchroom arrangements, additional time etc

  • Allow for private bathroom or changing room as needed

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