Table 4 Language used by caregivers of children with late infantile versus juvenile MLD to describe specific developmental issues of MLD

Coordination difficulties

Delayed walking, difficult walking, strange posture

Delayed when walking, many falls, gait sluggish

Early to crawl, but late to stand up and hold onto things

Has never been able to walk freely, twisted foot while walking

Never walked, left was weaker than her right side

Not progressing with walking (started taking first steps but did not progress after)

Problems with motor development

Slow motor skills

Stagnation of motor development

Started to lose balance

Struggled to run- uncoordinated, clumsy, started walking late as a baby

Trouble walking

Unstable sitting, walking

Unsteady gait

Wasn’t getting on the couch anymore

Wasn’t walking

Abnormal gait

Broad-based gait

Loss of balance, tripping

Pain when walking, motor problems indicated by the teacher

Unstable walking, never able to ride a bike

Clonus/tremor

Clonus

Developed a small tremor in hands

Shake really bad after naps, foot tremoring

Slight tremor

Slight tremor, eye lid twitching (that pediatrician noticed on regular checkup)

Tremors

Very mid absences

Arm movement as if after a stroke

Hand tremors

Comprehension challenges

Appearing sleepy and dazed

Cognitive delays

Gaps between achieving milestones was getting bigger

Only 6 words

Ability to do math, top of his class in 1st grade, 2nd grade couldn't monitor progress and didn't know he was struggling, 3rd grade couldn't add

Difficulty learning (learning vocabulary)

Forgetful- getting lost

Lack of concentration, issues with concentration levels

Regression in writing

Changes in personality/ behavior

Much crying

Severe fatigue, nocturnal awakenings

Behavioral disorders

Obstinate

Peeing pants in school

Personality changes, impulsive behavior, issues with sleep, loss of interest in activities that […] used to be interested in

Vision issues

Strabismus, nystagmus

Sudden squint

Went cross-eyed overnight