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Table 2 Responsibilities of the Caregiver

From: Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data

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
  1. aThe term aggressiveness refers to perceived disruptive behavior