Ask Nurse Lynn: Supporting Bathroom Hygiene

Question:

Female, 15 years old, deletion subtype

My daughter never wants to wipe herself around her back. Her underwear is stained most of the time. I always have to remind her to wipe. Sometimes she gets frustrated because she doesn’t want to do it and then she has this odor. You can tell that she’s walking by and that she didn’t wipe. Or she scratches her private parts and does not clean her hands after. How can I help her?

Nurse Lynn’s Response:

Hygiene challenges like wiping and body odor are very common in individuals with PWS. This is often related to differences in awareness, sensory sensitivity, routine building, and sometimes just not recognizing when they need to clean themselves well. Many individuals need very clear, step-by-step teaching and ongoing support for daily living skills like toileting and hygiene.

Some families find that using a bidet attachment or a toilet with a built-in bidet can make a big difference. It helps clean more thoroughly and reduces the need for a lot of wiping. You can also try using some type of wet wipes (but don’t flush them) as these often feel better and clean more effectively than dry toilet paper.

Some families find that visual supports can be very helpful. A simple checklist in the bathroom (for example: wipe → check → wipe again if needed → wash hands) or even a short social story can guide her through the steps and reduce frustration. Practicing this routine at calm times—not just during stressful moments, can also help build the skill over time. If the odor continues or if there is frequent scratching, it may also be worth checking with her healthcare provider to rule out things like irritation, infection, or constipation that can make hygiene harder.

The use of positive reinforcement goes a long way. Praise or small rewards for any step done well can be very effective. For example, saying, “I noticed you wiped and checked, that was great!” Individuals with PWS often respond best to consistency, clear expectations, and encouragement. Most importantly, focus on progress, not perfection, as this is a skill that takes time, repetition, and ongoing support to develop.

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