Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]

In this 30‑minute video, Patrice Carroll, Elizabeth Roof, and Dr. Deepan Singh discuss strategies for addressing behavioral and mental health challenges in children aged 5 and up with Prader-Willi syndrome.

Presentation Summary With Timestamps

0:00 Introduction

• Behavior of children with Prader-Willi and Schaaf-Yang syndromes can be challenging for caregivers.
• The purpose of this discussion is to offer tools and resources to help address behavioral challenges.
• Strategies discussed will focus on managing the environment, identifying mental health issues, and identifying potential prescription medications to use.
  
  
• Elizabeth Roof, Vanderbilt University, introduction: working with PWS children for almost 30 years.
  • She is interested in when behaviors emerge in the lifespan, and subtype differences that occur.
  • She studies best practices for schools, residential centers, and vocational training programs.
  • The purpose is to maximize the strengths of people with PWS and mitigate deficits by focusing on the whole person.
• Patrice Carroll, director of PWS services at Latham Centers in Massachusetts, introduction: working with PWS children for 23 years.
  • Her focus is on addressing the challenging behaviors that occur in the home and school.
• Deepan Singh, child, adolescent, and adult psychiatrist introduction: board certified in child and adult psychiatry.
  • He is vice chair of ambulatory psychiatry at Maimonides Medical Center.
  • He has worked with people with PWS for eight or nine years; it is “the love of my life as far as work goes.”

3:32 One Piece of Advice for Parents

• Carroll: If your child has more challenging behaviors than other children, don’t take it as a reflection on your parenting skills.
  • Use social media to get ideas about what other people are doing, not to make comparisons.
• Roof: In addition to taking care of their children, parents need to take care of themselves mentally, emotionally, and physically.
  • When parents take care of themselves, they have more resources to take care of their children.
• Singh: Don’t approach raising a child with PWS as an “individual sport.” Take advantage of all the services you are entitled to.
  • The United States has expertise, research, and clinical trials in PWS that are not available in many other places.
  • Give all the available services a chance to work.

6:09 What Behaviors Might Indicate Our Loved Ones Need to Be in a Group Home?

• Carroll: We need to change the narrative about residential or group homes; parents should not consider these an indication that they have failed as parents.
  • Most people with PWS will never need that level of service.
  • If your child had an incredible gift, you would give them the best opportunity to develop it.
  • Likewise, if your child is not thriving and they can be in a situation that enables them to become their best selves, that is not giving up on them—it is a gift.
• Roof: PWS is a spectrum disorder; online posts from other parents often illustrate the extremes of behavior issues, whereas most people fall between the extremes.
  • She knows children in residential care who have done well and feel understood.
  • Most people with PWS don’t need residential care, but many who go to a residential setting do well because they feel at home there.
• Singh: Parents often are not prepared for the drop in services when their children reach age 21.
  • The loss of services creates a lack of structure detrimental to the mental health of people with PWS. Depression and psychotic breaks can result.
  • Parents should therefore take advantage of the services that exist.

11:56 Behavior Management vs Medication

• Carroll: Before introducing any behavior protocol, parents should ensure that their children are in an environment where it is understood that their behavior is not intentional.
  • Your child does not need to be fixed; rather, the environment must be adapted to their needs.
  • Given the choice, children would want you to be proud of them.
  • Until everyone understands that the child’s behavior is not under their control, behavior protocols will be ineffective.
• Roof: Has witnessed school officials referring to negative PWS behaviors as the kid’s “choice.” This leads to PWS children being labeled as “bad kids.”
  • The behavior is not a choice.
  • It is also important to note when negative behaviors occur across settings. When this occurs, medicine is sometimes needed.
  • Medications can be a game changer; children with PWS can become more adaptable and flexible.
  • We’re not fixing their PWS; we’re managing behavior with behavior plans and sometimes medication.
  • It’s not fair to ask for neurochemistry to be fixed by behavior intervention; unfair to ask them to do something they’re not capable of doing.
• Singh: People often come to regret having stopped taking medications.
  • There’s a deep-seated stigma against mental illness in general, and particularly when it comes to medication.
  • No one would struggle with the idea of taking medication for diabetes or seizure disorder.
  • For PWS, the decision to prescribe medication is based on the pervasiveness of symptoms in multiple settings.
  • We are aware of the long-term effects of medications, so we are careful about prescribing them; we look for moderate to severe symptoms.

19:43 Anxiousness in PWS

• Carroll: Anxiousness in children with PWS arises most around issues in understanding, either miscommunication or not feeling heard.
  • Anxiousness is displayed in many ways and is person specific. No single answer in her experience.
• Roof: The biggest predictor of aggression is anxiety.
  • Children will often have an outburst, then go off and rest and return with normal behavior.
  • If we don’t deal with anxiety, it can lead to aggression. So we must try to manage or redirect it.
  • Hopefully some recent clinical trials with medications will prove effective.
  • The world will not always be structured enough to prevent anxiety in people with PWS. We need to find ways through medications and other treatments to enable them to manage in their environment.
  • If they are not anxious, their reactions will be less severe.
• Singh: It is important to recognize how the anxiousness is presenting in your loved one and to watch for changes in the level of that anxiousness.
  • When there is a sudden worsening in anxiety, it can be a sign that something else is going on.
  • In such cases parents might want to reach out to a psychiatrist.
  • The sudden behavioral change could be anything from mild separation anxiety, which is exaggerated in people with PWS, to a teenager experiencing a first psychotic episode.

25:41 Q & A