Table 3 Language used by caregivers to describe initial signs and symptoms of MLD
SECTION I: Language used by caregivers to describe initial signs and symptoms of MLD | ||
|---|---|---|
Symptom category | Language used by caregivers | |
Coordination difficulties | Abnormal gait Broad-based gait 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 Loss of balance, tripping Never walked, left was weaker than her right side Not progressing with walking (started taking first steps but did not progress after) Pain when walking, motor problems indicated by the teacher | 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 Unstable walking, never able to ride a bike Unsteady gait Wasn’t getting on the couch anymore Wasn’t walking |
Clonus/tremor | Arm movement as if after a Stroke Clonus Developed a small tremor in Hands Hand tremors Shake really bad after naps, Foot tremoring | slight tremor slight tremor, eye lid twitching (that pediatrician noticed on regular checkup) tremors very mid absences |
Comprehension challenges | 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 Appearing sleepy and dazed Cognitive delays Difficulty learning (learning vocabulary) | Forgetful- getting lost Gaps between achieving milestones was getting bigger Lack of concentration, issues with concentration levels Only 6 words Regression in writing |
Changes in personality/behavior | Behavioral disorders Much crying Obstinate Peeing pants in school Personality changes, impulsive behavior, issues with sleep, loss of interest in activities that […] used to be interested in | Severe fatigue, nocturnal awakenings |
Vision issues | Strabismus, nystagmus Sudden squint | Went cross-eyed overnight |
SECTION II: Language used by caregivers to describe specific developmental issues of MLD | ||
|---|---|---|
Developmental issues | Language used by caregivers | |
Developmental delays Reaching milestones slowed | Delayed walking Developmental delays, small, cognitive delays Early to crawl, but late to stand up and hold onto things, gaps between milestones was getting bigger | Late walker Difficulty learning (learning vocabulary) Slower than average child, wasn’t walking Started walking late as a baby |
Developmental stagnation Milestones never met | Could never walk freely Could never walk independently Development not progressing Motor development stagnation | Never able to ride a bike Never walked Not progressing with walking (started taking first steps but did not progress after) Stagnation of motor development |
Developmental regression Losing milestones that were previously reached | 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 Appearing sleepy and dazed, loss of interest in activities that he used to be interested in Issues with concentration levels, little bit of regression (not age-appropriate behavior) | Forgetful- getting lost, peeing in pants at school Loss of balance Only 6 words, regressing Regression in writing Trouble walking (later on) Unsteady gait, sudden squint Wasn’t getting on the couch anymore Went cross-eyed overnight and started to lose her balance |