Serious Mental Health Problems in Prader-Willi Syndrome

Look for changes in the person from their usual behaviors (their baseline):

• Eating – less interest in food, consuming less food than usual
• Behavior – more agitation or aggression, more talkative or more withdrawn than usual (spending more time alone, less willing to engage in activities they previously enjoyed)
• Sleep – sleeping less, or a change in sleep pattern (up more at night or earlier in the morning, more napping)
• Grooming – loss of interest in self-grooming (not changing clothes, brushing hair or teeth, showering)

If the above changes in usual behavior are not related to physical illness and have continued for more than 1-2 weeks, take the person with PWS for an assessment.

Start with their primary care doctor or mental health provider.

• Make sure a thorough assessment is done including potential medical causes of the behavior change (rule out infection, medication reaction, sleep disorder)
• Provide your doctor with information about mental health issues in PWS:
  
  • PWSA-USA has a download with PWS information for psychiatrists
  • Dr. Tony Holland (IPWSO): The Mental Health of People with Prader-Willi Syndrome with Specific Focus on Mood Disorders and Psychotic Illness
• Your doctor can call PWSA-USA at 1-941-312-0400 and request a peer-to-peer consultation for PWS mental health concerns.

The Golden Rule for Medications in PWS  =  Start LOW Go SLOW = start with a low dose and evaluate symptoms, if  recommended to increase medication,  increase slowly and only 1 medication at time 

• Identify target behaviors and track those behaviors when starting or increasing a medication to see improvement or worsening of symptoms (pick 2-3 behaviors to track or use a digital behavior app).
• Ask your doctor how quickly the medication works so you know when you might see changes.

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

• 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.
• People with PWS are highly stress sensitive. Even seemingly small changes in their environment (sibling moving out, change in teacher/aide/caregiver, illness in close relative) have the potential to cause psychiatric symptoms (such as hearing voices/psychosis, depression). These symptoms can usually be successfully treated with use of appropriate medication.
• It is common for people with PWS to talk to themselves and with “imaginary friends.” If the amount of talking significantly increases and/or this “friend” starts being scary or mean, this is concerning and would warrant assessment by a health care professional and possible treatment.
• 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 A LOT of education about managing food and food security for the person with PWS in the hospital setting.

Watching for Mental Health Issues In Times of High Stress

In the podcast below, Lauren Schwartz-Roth, PhD, clinical psychologist and mom to a young adult with PWS, shares how to identify and treat serious mental health issues in our loved ones with PWS.