TIP of the WEEK: Bladder issues in PWS

November 7, 2014

Many of our kids and adults have issues with urinary incontinence. This is often seen as behavioral, but the truth is, although it can be, it seldom is something that they have control over. The typical person feels the need to urinate when the bladder is half full (about one cup) and has extreme urgency when the bladder is near full (about 2 cups). Individuals with PWS does not feel that initial “half full” urge to urinate, and by the time they do feel the need to go, the bladder is nearly full. This means that by the time they feel the urge, it is almost too late. You know this too well if you have ever been stuck in traffic with a person with PWS that once he or she has to go, you have minutes at most to get to a bathroom. So here is what you can do:

1. Plan bathroom breaks at least every hour whether your child has the urge to go or not.

2. The flow of a person with PWS is different as well and he or she should be encouraged to wait several seconds before stepping away from the toilet. It may take up to 30 seconds for the flow of urine to start.

3. Encourage your PWS individual to take in fluids during the daytime and less so in the evening. Overnight incontinence is extremely common. Restricting fluids after dinner will help with this.

4. Avoid shaming of any kind. This will only foster sneaking behavior around incontinence such as hiding wet underclothes and pants, unwanted behaviors due to embarrassment or guilt, etc…

Don’t forget that people with PWS are more prone to hyperhydration than a non-PWS person. Hyperhydration can be just as or even more dangerous than dehydration. Always check with your child’s doctor as to how much fluid your child should drink each day.

Patrice Carroll
Manager of PWS Services

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