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What you need to know

A few types of muscular dystrophy may present with a psychological complication. It is important to discuss the child’s individual issues with the team and treat the child according to the plan developed.

Psychological and psychosocial difficulties
  • Fatigue and pain may make psychological problems worse.
    • Fear of pain and joint instability may lead to avoidance behavior.
      • This may make the dysfunction and disability worse.
    • Psychological distress may increase pain.
  • Children may be self-conscious of physical differences.
  • Depression is often associated with chronic pain and disabilities.
    • Individuals may feel misunderstood and/or alone.
  • Other possible psychological problems:
    • Anxiety
    • Low self-confidence
    • Negative thinking
    • Hopelessness
    • Desperation 
  • Other considerations:
    • Misconceptions of abilities can cause insecurity and anxiety in social situations.
    • Physical limitations may cause frustration or embarrassment.
    • Medications may have side effects that impact behavior and/or school work.
Specific behavior concerns for boys with Duchenne muscular dystrophy
  • Increased incidence of:
    • Impulsivity
    • ADD
    • Autism
    • Oppositional/defiant behaviors
    • Aggression
    • Obsessive like features
      • Difficulty with mental flexibility
    • Depression, and anxiety
      • Physical signs
        • Headaches
        • Stomachache
        • Sensitive
        • Changes in appetite
      • May be due to awareness that this is a fatal disease
  • Other considerations:
    • Difficult concentrating, and controlling emotions
    • Poor coping skills
    • Rigid and lack flexibility in thinking
      • Can lead to non compliance or arguing
    • Difficulty with transition
    • Emotional moodiness
    • Social problems due to:
      • Physical limitations
      • Cognitive delays
      • Social deficit
      • Difficulty identifying and interpreting facial features
      • Lack of practice with social skills
    • May be on steroids
      • May make boys more emotional and more active than normal

What you can do

Children who have both muscular dystrophy and psychological complications may benefit from:
  • Counseling and support for pain
  • Behavioral supports
  • Meditation and yoga
  • Antidepressants
  • Help with adaptation and acceptance of issues and potential limitations
    • Be supportive
    • Understanding
    • Consistent
  • Some individuals need support for social skills development
Supportive ideas
  • Make eye contact to help ensure attention
  • Be clear and concise
  • Provide routine and structure
  • Clear boundaries
  • Transitions
    • Provide advanced warning of change
    • Visual cues