Table 2.

Summary of Leukodystrophy Patient Caregiver Recommendations for Nonpharmacologic Sleep and Pain Management.^a

Pain management

Rocking, repositioning, music, lighting, warm water, and vibration can all be helpful particularly for children with spasticity and in the intermediate and advanced stages of the disease.

Aquatherapy provides the opportunity for a child in an advanced symptomatic stage to be temporarily free of constant support—whether from wheelchair positioning or being held—and experience the freedom of motion in the water.

Pain from feeding intolerance and constipation may be alleviated by adjusting a child’s feeding schedule, venting gastrostomy tubes, or through enemas or light abdominal massage.

Monitor discomfort by tracking vital signs, such as with a home pulse oximeter device

Sleep

Weighted blankets and the use of aromatherapy pillows to position small children in bed.

Memory foam mattress topper to be used as an easily portable and adaptable support to prevent pressure sores and maintain comfortable positioning while away from home

^a These recommendations have not been scientifically validated.