Signs of Weakness by Parent Report

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/peers, the themes and specific words most often described by parents as their first concerns include:

Attribute	Examples of parent words and descriptions
Overall concern	“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
Coordination problems	“She seems uncoordinated”
Head Control	“She struggles to lift her head”
Head Control	“He hates tummy time”
Hypotonia	“He’s floppy”
Hypotonia	“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”
Rise from floor	“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”
Standing	“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.

How Caregivers Describe Reporting Concerns to Providers, About Children Later Identified as Having a Neuromuscular Disorder

Disorder	Examples of caregiver concerns
Congenital muscular dystrophy	“She could not crawl or raise her head, and was a floppy baby. She had a lack of movement, lack of strength, and poor eating.”
	“He can’t hold his head up off my shoulder. It takes forever to drink a bottle and he gets so tired he falls asleep. He is really floppy when you hold him.”
	“She has a lack of strength. She stopped meeting normal milestones and didn’t develop new physical ones.”
Becker muscular dystrophy	“His leg cramps are interfering with his play.”
	“We worry about his ability to run, falling often, and problems standing up.”
	“He seems to get tired easily with normal activity. Why do his muscles seem toned but yet he doesn’t seem to have as much strength or energy as my other kids?”
Duchenne muscular dystrophy	“He is taking a while to walk and falling more than normal.”
	“He doesn’t seem to be hitting milestones anywhere close to when his brother did or when other kids his age do.”
	“He seems weaker than other babies, he’s not walking, does not say mama, and has behavior issues.”
Spinal muscular atrophy	“She can’t hold her head up and can’t do ‘tummy time’.”
	“He was slow in crawling and won’t put any weight on his legs.”
	“He has hand tremors, is falling down a lot, and is walking funny.”