Mental Health in Prader-Willi Syndrome

People with Prader-Willi syndrome (PWS) are at a higher risk of developing depression, bipolar disorder, and psychotic symptoms, particularly while in their teens and young adulthood. Learning to recognize early warning signs can help families seek treatment sooner and improve outcomes. This page explains what to watch for, where to get help, and how to support your loved one.

Mental health challenges are common in people with Prader-Willi syndrome, especially during adolescence and adulthood. Changes in mood, thinking, sleep, or behavior can sometimes be difficult to recognize because many people with PWS already experience anxiety, rigidity, or behavioral challenges.

Knowing what is typical for your loved one—and noticing when something changes—can help you get the right care early. Mental health challenges in people with PWS can be successfully treated, particularly when they are recognized promptly.

The most important thing to watch for is a change from the person's usual behavior. In people with PWS, changes in eating, sleep, mood, or daily functioning may be early signs of a developing mental health condition.

Look for changes in the person from their usual behaviors:

• Eating less or showing less interest in food than normal
• Sleeping much more or less than usual,  or a change in sleep pattern
• Becoming unusually withdrawn or losing interest in favorite activities
• Increased agitation,  aggression, or rapid talking
• Neglecting personal hygiene or grooming
• New confusion, suspiciousness, or unusual thoughts

If these changes continue for more than one to two weeks and cannot be explained by illness or another medical issue, contact your healthcare provider for an assessment.

The Golden Rule for Medications in PWS

Start low. Go slow.

Because people with PWS may respond differently to medications, it's recommended to begin with low doses and to increase gradually while carefully monitoring symptoms. Whenever possible, only change one medication at a time, whether that is adding a new medication or changing the dosing. 

Tips for Starting or Modifying Medications

• Ask your doctor how quickly the medication works, so you know when you might see changes.
• Before changing medications, identify 2 to 3  target behaviors and track those behaviors to see if the medication is improving or worsening symptoms 

When working to identify and treat mental health symptoms in people with PWS, there are several special considerations: 

Genetic Subtype

People with PWS by UPD have a very high risk for psychiatric symptoms, but people with the deletion subtype also have an elevated risk compared to the typical population.

Stress Can Trigger Symptoms

People with PWS are highly stress-sensitive. Life changes, even positive ones, can trigger psychiatric symptoms. Even seemingly small changes in their environment, such as a sibling moving out, a change in a teacher/aide/caregiver, or an illness in a close relative, have the potential to cause psychiatric symptoms (such as hearing voices/psychosis, depression). These symptoms can usually be successfully treated with the use of appropriate medication.

Imaginary Friends

It is common for people with PWS to talk to themselves and with “imaginary friends.” If the amount of talking significantly increases, or this “friend” starts being scary or mean, this is concerning and would warrant assessment by a health care professional and possible treatment.

Going to the Hospital

If the person with PWS goes to the ER or is hospitalized, be aware - hospital settings often do not understand food issues in PWS. Hospital staff will need education about managing food and food security for the person with PWS in the hospital setting.

Don't wait for a crisis to find mental health care. During adolescence, identify a local mental health provider who is willing to learn about Prader-Willi syndrome and can become part of your care team if concerns arise.

If you are concerned about an issue now, reach out to your loved one's primary care doctor or mental health provider. Make sure a thorough assessment is completed to rule out any potential medical causes of the behavior change (infection, medication reaction, sleep disorder).

If your doctor is not already familiar with mental health issues in PWS, PWSA | USA has a download you can give them with PWS information for psychiatrists. You may also be interested in reading more about  The Mental Health of People with Prader-Willi Syndrome with Specific Focus on Mood Disorders and Psychotic Illness, written by Dr. Tony Holland.