Constipation is a common concern for people with Prader-Willi syndrome (PWS), but until now, there has been very little research describing how often it occurs or what it looks like in children and young adults with PWS.
A new study published in JPGN Reports provides some of the first data on constipation and stooling problems in children and young adults with PWS. The findings suggest that constipation may be more common than previously recognized—and that simply asking how often someone has a bowel movement may not be enough to identify it.
What did the study find?
Researchers at Seattle Children's Hospital reviewed bowel-health information from 69 people with PWS ages 1 to 21.
They found that:
- 17% met the study's criteria for functional constipation. This was about 80% higher than the rate reported in the general pediatric population.
- All of the participants had bowel movements at least three times a week, showing that regular bowel movements do not necessarily mean someone isn't constipated.
- 33% reported hard or painful stools, and 38% reported stools that were large for their age.
- 35% of toilet-trained participants age 4 and older had stooling accidents at least once a month.
- 50% of the parents whose loved one met the study's criteria for constipation did not identify their child as being constipated.
- Constipation was more common among older participants, although the study was not large enough to determine why.
Why is this important for families?
The biggest takeaway is that constipation in PWS may be easy to overlook.
For many people, constipation is assumed to mean not having a bowel movement very often. But in this study, everyone who met the criteria for constipation was having bowel movements at least three times a week.
This shows we should be paying attention not only to how often someone goes, but also to what the stool is like. Hard or painful stools, unusually large stools, difficulty passing stool, and stooling accidents may all indicate constipation.
What should parents watch for?
When thinking about your child's bowel habits, consider:
- Are stools hard or painful?
- Are stools unusually large?
- Does your child have difficulty passing stool?
- Are there stool accidents after toilet training?
- Has there been a noticeable change in bowel habits?
These details may be more helpful than simply counting how many bowel movements occur each week. If you notice these symptoms, talk with your child's healthcare provider about whether constipation could be contributing to them.
What about treatment?
This study was designed to understand how common constipation is and what symptoms are associated with it. It did not test treatments for constipation. For families dealing with constipation, the best approach is to talk with your healthcare provider about an individualized bowel-management plan.
The bottom line.
This study gives families an important new piece of information: constipation appears to be relatively common in children and young adults with PWS, and it may not always be obvious.
A person with PWS can have regular bowel movements and still be constipated.
So don't just ask, "How often do they go?"
Also ask:
Is it hard? Is it painful? Is it unusually large? Is it difficult to pass? Are there accidents?
Recognizing these signs can help families and healthcare providers identify constipation and address it sooner.
This article is for educational purposes and is not a substitute for medical advice. If you have concerns about constipation or stooling problems, talk with your healthcare provider.
Read the study: Functional constipation in children and young adults with Prader-Willi syndrome, published in JPGN Reports., published in JPGN Reports.
