Table 2 Responsibilities of the Caregiver
Dealing With Behavioral Issues | |
Aggressivenessa | Parents need to be on constant watch for potential people (eg, other children or elderly) that their child may harm |
Loss of fear | Because children with Sanfilippo B are delayed cognitively, they do not recognize the inherent dangers of • Crossing the street without an adult • Walking into the deep end of a pool (and not being able to swim) • Putting their hands into very hot water • Eating anything that they can reach |
Hyperactivity | Hyperactive children physically exhaust parents, who may need to chase after them going from room to room or keep them out of harm’s way |
Day-to-Day Functioning | |
Sleep issues | Waking up in the middle of the night several times to check on the child and/or having the affected child wake up the parents due to child’s sleep disturbance can have a cumulative detrimental impact on the parents’ ability to function |
Transportation | Getting children to and from doctor’s appointments and into cars (staying still) |
Medication administration | Ensuring that children receive medications when needed can be particularly challenging when their children do not follow directions |
Bathing/grooming/toilet/dressing | General grooming/hygiene and toilet duties like bathing, brushing teeth, and brushing/combing hair |
Food preparation | Preparing the majority of meals at home because going out is generally considered troublesome |
Mobility assistance (wheelchair) | Helping the child get around; climbing staircases can be particularly tiring, especially if wheelchair transportation is involved |