Ask Nurse Lynn: Hair Pulling, Repetitive or Self-Soothing Behavior

Question:

Female, 37 years old, deletion subtype

Lately our daughter has been slowly and absent-mindedly pulling out her hair a few strands at a time and eating it to the point that she’s developed very large bald spots—and it has also caused severe constipation. We seemed to have solved the latter for now with our doctor’s help. But we think this might be a calming behavior as she does it while watching tv or looking at her phone. We’ve had her start wearing a baseball cap (she has many) all day, and that seems to help, though it is too early to tell for sure. Do you have any suggestions about how to help us help her to overcome this? Are there any particular medications that address this that your know of?

Nurse Lynn’s Response:

In PWS, behaviors such as hair pulling and hair eating can sometimes occur as part of the repetitive or self-soothing behaviors that many individuals experience, particularly during periods of boredom, anxiety, or while engaged in passive activities such as watching television or scrolling on a phone. Behavioral guidance emphasizes that many repetitive behaviors in PWS are often linked to underlying anxiety, sensory needs, or difficulty with self-regulation. It is very important that you have already addressed the medical side of this with your physician. When hair is eaten, it can collect in the stomach and intestines and form a mass called a trichobezoar, which can lead to severe constipation, abdominal pain, or even bowel obstruction. Continuing to monitor bowel habits and contacting the physician if you notice worsening constipation or abdominal discomfort is very important.

From a behavioral standpoint, reducing opportunities for the behavior while also providing alternative ways to keep the hands busy can be very helpful. The baseball cap strategy you mentioned is an excellent example and something many families find useful. Other strategies can include hairstyles that make hair harder to access, such as braids or buns, and providing “busy hand” items like stress balls, therapy putty, textured rings, or small fidget tools, especially during the times when the behavior tends to occur. Because hair pulling often happens almost automatically, gentle redirection and increasing awareness can help. Behavioral approaches that focus on reducing anxiety, maintaining predictable routines, and redirecting hands to other activities are commonly recommended for repetitive behaviors in PWS.

If anxiety or compulsive tendencies appear to be contributing, it may also be helpful to discuss this with her care team. There are no medications specifically approved for trichotillomania, but clinicians sometimes use medications that target anxiety or compulsive behaviors. In some cases, the supplement N-acetylcysteine has been shown to help with hair pulling. As with many medications used in PWS, providers often recommend the approach of “start low and go slow.” Most importantly, remember that these behaviors are usually not intentional but rather a way the brain is trying to regulate stress or sensory needs.

Resources:

An openlabel pilot study of Nacetylcysteine for skinpicking in PraderWilli syndrome

Strategies, Interventions, and Routines for the Prevention or Mitigation of Skin Picking in Individuals with Prader-Willi Syndrome

Skin-Picking-BD.11.4.2020.pdf

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