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By Parent Report PDF Print E-mail
Written by Administrator   
Friday, 04 February 2011 05:21

The Task Force asked parents of children with the Duchenne and Becker (D/BMD), congenital muscular dystrophies (CMD) and spinal muscular atrophy (SMA) to describe the pre-diagnostic experiences of how they presented their earliest concerns to their healthcare providers. Goal: Help providers understand the words and phrases that parents most often reported use when describing their children’s weakness.


Comparison to sibs/peersThe themes and specific words most often described by parents as their first concerns include:

  • “He does not keep up with other kids his age”

Coordination problems

  • “She falls down a lot even when there is nothing to trip over”
  • “She seems uncoordinated”

Head control

  • “She struggles to lift her head”
  • “He hates tummy time”

Hypotonia

  • “He’s floppy”
  • “Feels like a rag doll”

Intuition

  • “Something just isn’t quite right

Jumping - inability to do so

Lack of progression in motor skills

  • “She’s not where she should be”

Rise from floor

  • “He’s climbing up his body”
  • “He rises from the floor using a specific pattern”

Stairs

  • “She has a hard time going up stairs”
  • “He’s slow up the stairs” 
  • “He cannot alternate feet”

Standing

  • “She won’t bear weight on her legs”
  • “Her legs give out”

Walking

  • “She’s not walking yet at all”
  • “awkward” or “funny” walk
  • “He always walks on his toes”

Weakness

  • “His legs are weak”
  • “She can’t reach out with her arms”
  • “She’s weak all over”

Note: Parent statements of concern may be vague and such statements should prompt specific follow-up questions.

Last Updated on Thursday, 10 October 2013 19:37
 

Did you know?

Increased CK (especially if CK>3x nl) indicates the need for prompt referral and diagnosis.
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