Modifications

There is not a single exercise program that works for each child with Marfan syndrome.  A child may need help developing a realistic self-concept of abilities and limitations.

Ideally the child should have a non-competitive isokinetic activity preformed at a non-strenuous aerobic pace where he/she can stop and rest when tired and have no forceful contact with other players, equipment, or ground.  There should be a minimal chance of sudden stops and/rapid change in direction. 

It is generally recommended that people who have Marfan syndrome stay at an aerobic level of work at 50-60% of their maximal heart rate (if no evidence of aortic dilatation the physician may permit activity at higher levels of intensity). Physicians may recommend a graded exercise program. 

  • Examples include; Brisk walking, leisure biking, slow jogging, shooting baskets, slow tennis, use of 1-3 pound weights
  • They shouldn’t strain and should use low-tension settings on equipment, such as treadmills or exercise bikes
  • Individuals must learn to not test limits. This is very hard for children.

Other modifications:

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  • May be hard to fit into desks, chairs
  • Hard to sit comfortable for a long period of time
  • Allow to stand
  • Equipment: a child may need a brace
  • May affect maneuverability, flexibility, speed, and endurance
  • Provide privacy in changing to avoid embarrassment
  • Check what restrictions with brace may be
  • If chest wall surgery occurs, ask what the restrictions are.
  • Mouth guards
    • May require special one
  • If hernias are present, individuals may need supportive gear and instruction in proper lifting, and minimize lifting and climbing
  • Clothing should be supportive and appropriate to avoid increased risk of falling
  • If glasses: as with other children with glasses they should be shatterproof and rounded
  • If individual has contact lens, these lenses are at increased risk of falling off because of flatter lens
  • May need sun glasses for activities outside or in brightly lit places

  • Encourage children to take part in noncompetitive activities performed at a sub maximal level of effort.
    • Instruct in safe levels of intensity and duration
    • Should be taught never to “push through” symptoms
    • Provide adequate time for gradual warm-up and cool down
    • Monitor level of exertion more closely under extreme weather conditions because this may add additional stress and may affect child’s endurance and exertion level
    • Many children are on beta blockers which will depress heart rate so heart rate is not indicator of exertion level (those on beta blockers <7 years of age should keep prolonged heart rate under 120/min)
    • Older children keep heart rate under 100 beats/min
  • Select activities to promote concept of self-competition to minimize the effects of peer pressure for the child to exceed physical exertion limits
  • Instruct in self-monitoring technique.
    • Provide opportunities for practice of exercise self-monitor
    • Instruct in relaxation techniques, safety, and breathing
  • May need additional time to get to class
    • Limit extra movement between classes
  • Extra books and/or a second locker may be needed to accommodate lifting/carrying restrictions.

  • Strengthening exercises for both muscles and ligaments
    • Address overall lack of bulk and muscle tone
    • Good for joint hyper extensibility (underdeveloped muscles)
    • Avoid heavy weights and intense isometric exertion
  • Pain (chronic)
  • Muscle fatigue
  • May require physical therapy
  • Modifications to improve coordination
    • May have poor eye hand and eye foot coordination
  • Provide opportunities to practice visual tracking of objects in motion and develop other sequential perceptual motor skills.
    • Fine motor
    • Gross motor
    • Balance
    • Spatial
    • Body awareness
  • May be able to enhance child’s body mechanics and improve posture with appropriate exercises.

  • Decrease duration of an activity
  • Decrease size of playing area
  • Frequent time out periods
  • Permit participation at child’s own rate
  • Eliminate competitive and emotional stress factors
  • Reduce weights
  • Use transportation and support devices
  • Sitting or lying down position may be better than standing
  • Use relaxation techniques and relaxing music
  • Incorporate proper breathing techniques
  • Should not carry heavy backpacks

  • Assign zones of play
  • Use individual activities
  • Use singles vs. doubles in racquet games
  • Use foam or Nerf balls when appropriate
  • Group children according to size, abilities, and needs
  • Provide clear concise directions, rules, and regulations
  • Provide areas free of obstacles, barriers, or hazards
  • Proper padding of facilities and equipment

  •  Use brightly colored objects
  • Use soft objects (Nerf)
  • Use Velcro to assist on catching
  • Decrease distances
  • Change implement to decrease speed of flight and movement (is whiffle ball)
  • Provide clear and close visual fields
  • Increase size of implement (softball)
  • Provide playing areas free of hazards
  • Use appropriate illuminations
  • Familiarize child with play area prior to start of the activity