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Managing Behavior and Mental Health [2022 CONFERENCE VIDEO]

In this video, Elizabeth Roof, Dr. Lauren Schwartz, and Dr. Deepan Singh explore behavior strategies and mental health issues in people with PWS.

In this one hour and 9-minute video, Elizabeth Roof, Dr. Lauren Schwartz, and Dr. Deepan Singh explore behavior strategies and mental health issues in people with PWS. 

Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.

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Presentation Summary With Timestamps

0:00 Introduction of Panelists

  • Introduction of panel by Tanya Johnson, mother of Dante who has PWS and founder of FPWR Canada.
    • Elizabeth Roof—behavior strategies for the home
    • Dr. Lauren Schwartz—assessing and managing mental health issues
    • Dr. Deepan Singh—recognizing and treating anxiety

4:50 Elizabeth Roof: Behavior Strategies

  • Elizabeth Roof is a research associate at Vanderbilt University Department of Psychology.
  • She has worked for more than 28 years with individuals with PWS and conducted longitudinal research studies; she has helped manage 9 clinical trials in PWS.
  • When FPWR began, there were no clinical trials.
  • She wants to talk about the nitty gritty of how to work with your child.
  • In some cases, you’ll be looking ahead; like talking about financial aid when your kid is 5. 
  • There are temperament qualities that work well with PWS, because at the end of the day, we are not going to be able to “fix” PWS; we kind of manage it and stay ahead of the problem.
  • Moms’ mental health issues predict behavior issues. 
  • Self care is crtiical!
  • There is a great deal of variety in phenotypes in PWS—one size doesn’t fit all.
  • Some people have more food issues, while others have more behavior issues.
  • Environment and family dynamics can influence PWS presentation.
  • PWS is not the same for everyone.

7:34 Subtype Differences

  • If your child has deletion, they are more likely to have:
    • More skin picking
    • Good puzzles skills
    • Good sense of direction/memory
    • Mellowing of behavior as they age
    • Food issues are usually bigger than behavior issues
  • IF your child has UPD/IMP MUT (imprinting mutation), they are more likely to have:
    • More autism features
    • Better verbal skills
    • Tend to get stuck/argumentative (little lawyers)
    • Higher risk of psychotic and psychiatric features
    • Seem to gain skills as they age
    • Behavior issues are usually bigger than food issues

9:50 Anxiety in PWS

  • Anxiety can look like worry.
  • It can mean kids have a constant need for reassurance.
  • They may feel the need to control situations/people.
  • They may push back in new situations.
  • They may have many many questions about schedules and expectations.
  • Transitions are very hard.
  • They may have physical agitation, including rocking, fidgeting, and rubbing.
  • Tips for Dealing with Anxiety
    • Use visual schedules to help them mentally prepare for events
    • Compartmentalize: tell them what they need to know, and tell them at the last minute so they don’t spin out of control.
    • Create rituals to manage anxiety, like breathing, counting to 10
    • Use mantras to calm
    • Limit questions to 3
    • Take baby steps for change. Ruts are bad for people with PWS. Small changes can be accommodated with a heads up.

15:50 Coping with Oppositional Behavior

  • People with PWS often have to say “no” before they say “yes.”
  • It isn’t about you, so don’t personalize it. Don’t make it about you.
  • Wipe the slate clean every day, and offer 2 choices so they don’t get stuck.
  • Try to find ways for them to say “yes.”
  • Don’t ask a question if you don’t want “no” for an answer
  • Make cooperative statements to make agreement. She aways says “This is what’s going to happen,” and they don’t argue with her.

17:15 Aggression

  • Signs of Aggressive behavior:
    • Yelling
    • Throwing things
    • Swinging
  • Strategies:
    • Sometimes people walk up to somebody who’s upset and get low and in their face. You could get smacked.
    • Let them have time to vent and process.
    • Validate emotions, not behaviors.
    • Don’t have ammunition (things that can be broken) at arm’s length. Keep things out of the way.
    • If you see things escalating, redirect and do other things so it doesn’t get out of control.

18:15 Shutting Down

  • When emotions are too high, it can seem like nobody’s at home.
  • They won’t respond to their name, they don’t talk, they collapse on the floor. 
  • Sometimes people are dragging a 200-pound adult child with PWS. It doesn’t make sense.
  • If they are not bothering you, don’t bother them. Just let them get through it, and don’t give them a lot of attention. 
  • You don’t have to have a big conversation about it.
  • If it happens in public, just make sure they are safe and monitor the situation.
  • Your job is to find a way to say “yes.” A “yes man” is okay, but a “maybe man” is going to make things get out of control.

22.16 What Doesn’t Work for those with PWS

  • Parents should try to avoid:
    • Yelling
    • Arguing
    • Sarcasm or making fun of them to get them to see your side
    • Trying to get them to give in
    • Trying to reason when they are upset
    • Having to have the last word
    • Holding a grudge or taking behavior personally
  • What does work is:
    • Being a consistent calm presence for your child. They are living with an internal storm all the time, so if you’re upset, it just makes them worse.
    • Being flexible and creative. They will learn they don’t always get their way, but that you will help them come up with solutions.
    • Being emotionally secure and stable, not petty and ugly and sarcastic.
    • Knowing that you are in control, even when they are not.
    • Recognizing that it’s not about being right or wrong; it’s like solving problems.
    • Let them have the last word.

25:45 Q&A

29:45 Dr. Lauren Schwartz: Mental Health Guidebook

  • Dr. Lauren Schwartz created FPWR’s Mental Health Guidebook.
  • She gathered information by doing interviews with caregivers who had experienced serious mental health issues in their loved ones.
  • She also interviewed experts on PWS behavioral and mental health issues.
  • She reminds us that we are advocates for our loved ones throughout their lifetimes, and being informed and educated about issues that may come up is part of being a good and effective advocate for your loved ones.
  • Another reminder: PWS is a spectrum disorder, and not everybody is going to experience these symptoms; your child may have none of them, or many of them.
  • Mental health challenges are a hard reality, but there is reason for hope, and a lot of treatments for psychiatric symptoms are quite effective for our children. 
  • We have a great community of mental health professionals who have experience with PW and are willing to help us through it.

32:25 Guidebook Focus

  • PWS Mental Health Guidebook addresses the more common serious mental health issues
    • Severe depression and anxiety
    • Psychotic symptoms (auditory/visual hallucinations)
    • Bipolar disorder (“mania”)
    • Severe escalation of core PWS behavioral symptoms to the point of crisis (meaning the person may require acute intervention.
  • Often challenging to distinguish typical “PWS behaviors” from serious mental illness, which requires intervention
    • Caregivers say “At first, it looked like PWS but worse,” or “it took us a surprisingly long time to say this is a mental illness.”
    • If you suspect mental health challenges, it is helpful to track behaviors (frequency or intensity of symptoms, using a calendar or behavior tracker app).

34:02 Mental Health Concerns: What Should You Look For?

  • Look for CHANGES from the child’s usual baseline behaviors
    • Eating: less interest in food, or consuming less than usual
    • General behavior: more agitation or aggression, more talkative or withdrawn than usual, spending more time alone, or less willing to engage in activities they previously enjoyed
  • Special considerations for PWS:
    • Research shows that those with PWS by UPD have a high risk for psychiatric symptoms, but those with the deletion subtype also have an elevated risk compared to the general population.
    • Stress sensitivity: Most people with PWS are highly “stress sensitive.” Changes in their environment have the potential to increase psychiatric symptoms. For example: changes in teacher/aide/caregiver, illness in close relative or friend, or a sibling moving out.

37:00 Getting Help

  • Non-medication approaches:
    • Some caregivers and experts report that psychotherapy is helpful with some considerations:
      • Therapist must genuinely appreciate all the great aspects of your loved one’s personality.
      • Personality match and connection is critical (structured but flexible).
      • Most effective therapies involve concrete problem-solving, stress management, and supportive approaches.
      • Therapists should have previous experiences working with individual switch intellectual disabilities and cognitive differences.
  • Environmental intervention:
    • Escalation of behavioral and mental health issues may indicate the the person’s environment has become too stressful.
      • The 3 Rs:
        • Reduce stress and stimulation by reducing activities.
        • Routine: Be consistent with routines and schedules.
        • Review: Are things improving? What seems to be helping.
  • 3 areas to focus on:
    • School and other activities
    • Sleep
    • Food security
  • Getting help for your loved one
    • Mental health provider or primary care doctor
      • Make sure they do a thorough assessment, including potential medical causes of the behavior change (illness, infection, medication reaction, untreated sleep condition)
      • Provide the doctor/s with information about mental health issues in PWS:
  • Inconsistent food security can affect mental health. It’s important to quietly firm up existing routines and schedules to increase security around food. 
  • This can help people with PWS feel safer and less anxious.
  • Other ideas and strategies reported by parents:
    • Spending time with animals/pets
    • Weighted blankets
    • Music
    • Relaxation CDs or apps
    • Horseback riding
    • Walking/adapted yoga

48:35 Dr. Deepan Singh:  Anxiety and PWS

  • Dr. Singh is a board-certified Child Adolescent and Adult Psychiatrist.
  • He serves as the Vice Chair of Ambulatory Psychiatry Services at Maimonides Medical Center in Brookly, New York.
  • In the last 8 years, Dr. Singh has developed a strong interest in the management of PWS, and has a number of peer-reviewed publications and presentations.
  • He has published a book on the neural behavioral manifestations of PWS.
  • He discloses that he is an industry consultant.

50:06 Diagnosing and Recognizing Anxiety: Objectives

  • Recognize “anxiousness” as a common presentation in PWS
  • Recognize how anxiousness should be seen as a harbinger of another underlying issue.
  • Recognize some possible mechanisms underlying anxiousness in PWS
  • Review the different ways anxiousness presents in PWS
  • Review treatment options

51:07 Response Perseveration in PWS

  • When we are presented with an uncertain situation, our brains go through a process called response monitoring: what should I do next?
  • A lot of that is driven by what we are going through internally.
  • If this process doesn’t go well, it can lead to feeling anxious, doing things impulsively, reacting to the situation in a maladaptive way, getting stuck.
  • Response perseveration in PWS means responses to uncertainty. 
    • Responses can be adaptive, or maladaptive:
      • Response perseveration, anxiousness, impulse aggression, getting stuck, confabulation, skin/rectal excoriation

54:38 How does Anxiousness Present in PWS?

  • Response perseveration: the inappropriate repetition of a particular response despite the absence or cessation of reward.
  • It’s related to compulsivity.
  • Can include repetitive questioning, reassurance seeking, intrusive behavior despite negative response by caregivers.
  • It is closely related to impulsivity.

56:40 Management

  • Caregivers need to share the burden to reduce caregiver fatigue.
  • It’s important to recognize response perseverance.
  • Pay attention to food security.
  • Manage expectations.
  • Early behavioral treatment (see previous presentations)

1:01 Management with Medications

  • Anxiolytics with caution: Benzodiazepines
  • Serotonin Receptor Inhibitors: Sertraline, citalopram, fluoxetine
  • Antipsychotics: 
    • Typical: haloperidol, chlorpromazine 
    • Atypical: risperidone, aripiprazole
  • Strongly recommend seeing a psychiatrist. Even if there are not a PWS expert, they can reach out to someone like Dr. Singh for advice.
  • Non-psychiatrists may miss important symptoms.
  • Some medications have side effects, including weight gain, so people with PWS need to use them with caution.
  • Know that the meds are not treating PWS; they are treating the mental health symptoms.

1:06:22 Q&A

FPWR Enewsletter

Topics: Mental Health, Behavior

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.