In this one hour and 9‑minute video, Dr. Lauren Schwartz Roth, a clinical psychologist and parent to a young adult with PWS, explains how parents and caregivers can effectively assess and manage mental health issues if they arise in loved ones with PWS.
The session includes Q&A from participants in the 2021 FPWR Virtual Conference.
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.
Presentation Summary With Timestamps
3:24 Lauren Schwartz Roth presents
Identifying Mental Health Issues in People with PWS
- Dr. Schwartz discusses her involvement in creating a PWS Mental Health Guidebook that explored mental health challenges in people with PWS, focusing on understanding the challenges from the perspectives of parents and medical experts.
- People with PWS may present symptoms that are unique to the syndrome.
- Many parents express that mental health symptoms can be challenging to assess, understand, and find appropriate treatment for.
- Project focused on having parents understand what to expect, how to identify early symptoms, and when and how to get help if their loved one is struggling with mental health challenges.
4:38 Road Map for Today’s Session
- What do mental health challenges look like in PWS?
- What are early signs and how to best intervene?
- When to monitor behaviors and when is it time to get treatment? The use of medications and non‑medication approaches to treatment.
- Please note that PWS is a spectrum disorder and mental health issues will vary among individuals with the syndrome. Some individuals will have no challenges in this area, and some will have a few, and some will have quite significant challenges. So the information presented here does not apply to all individuals with PWS.
5:18 The Mental Health Guidebook
- Guidebook is available for download on FPWR website.
- Parents can share with providers or family members who want to learn more about mental health challenges in PWS.
- This is a difficult topic, and a difficult reality for parents of those with PWS.
- However, as challenging as it can be, many children respond to available treatments for mental health symptoms.
- The PWS community has many dedicated professionals and parents who are willing to share information and expertise.
7:37 Mental Health Guidebook project study protocol
- The Mental Health Guidebook project was a qualitative research study created by conducting extensive one‑on‑one interviews with caregivers, recruited through email and social media, whose loved ones with PWS were over the age of 10 and had experienced serious mental health challenges or very severe behavioral issues.
- Eight clinicians with extensive experience in PWS mental health treatment and behavior were also recruited to participate. The mean number of years in the field was 19.5.
8:59 Key serious mental health issues in PWS
- Most people with PWS have a variety of behavioral challenges, including anxiety, skin picking, repetitive questioning, and temper outbursts. But the Guidebook focuses on serious mental health issues. Those issues include;
- Severe depression
- Severe anxiety
- Psychotic symptoms (auditory/visual hallucinations)
- Bipolar disorder (mania)
- Severe escalation of PWS behavioral symptoms to the point of crisis
- Most families reported that the mental health symptoms started in early adolescence, around or after age 12.
11:21 The challenge of identifying mental illness symptoms in PWS
- Difficulty distinguishing typical “PWS behaviors” vs. serious mental illness was a significant challenge for caregivers — and sometimes professionals.
- Even experienced caregivers reported that it sometimes took them a long time to understand that the behaviors they were seeing were psychiatric symptoms.
- Tip: If you suspect mental health challenges may be developing, start to track behaviors. Put check marks on a calendar or notepad indicating frequency and/or intensity of symptoms (0‑10) you are concerned about.
- Behavioral trackers and apps can also help parents and caregivers detect changes.
13:01 Special considerations for PWS
- Genetic subtype differences: Research shows that those with PWS by UPD have a high risk for psychiatric symptoms, but people with the deletion subtype also have an elevated risk compared to the typical population.
- Stress sensitivity: Most people with PWS are highly stress sensitive. Changes in their environment have the potential to cause or increase psychiatric symptoms. Examples: changing teacher/caregiver/aide, illness in a close relative or friend, sibling moving out.
- Imaginary friends: It is common for individuals with PWS to talk to themselves and to have imaginary friends. This is a soothing strategy and not necessarily a problem behavior. But it is important to be aware of the baseline behavior and note if the amount of talking increases significantly, or if the imaginary friend becomes scary or mean. This can warrant assessment by a health care professional.
16:00 What should you look for?
- Look for changes from usual behaviors (baseline).
- Eating changes: PWS parents are often excited if their child eats less or walks away with food on their plate, but if a child consistently has less interest in food, or isn’t eating, that is concerning behavior.
- Behavior: More agitation or aggression, more talkative or more withdrawn. Are they less willing to engage in activities they previously enjoyed?
- Sleep: Are they sleeping less, or showing a change in sleep pattern?
- Grooming: Do they show a loss of interest in grooming, such as not changing clothes, brushing hair or teeth, or showering?
- See if changes are consistent over 1‑2 weeks and not related to physical illness or a medication change.
18:25 What do you do if you notice changes?
- Contact an established mental health provider or primary care doctor.
- Make sure the provider conducts a thorough assessment that includes medical causes of the behavior change, to rule out illness, infection, medication reaction, or sleep disorders.
- Provide the doctor with information on mental health issues in PWS.
- PWSA‑USA and IPWSO have downloads of information for providers.
- PWSA offers peer‑to‑peer consultation for PWS mental health concerns.
- Mental Health Guidebook one‑pager on FPWR website.
21:40 Medications
- Make sure the prescribing provider has reviewed information on PWS and mental health treatment.
- The golden rule for medications in PWS is “Start LOW, go SLOW.” PWS kids can respond to lower doses of psychiatric medications than the typical population.
- Be sure to inform the doctor of all the medication and supplements your child takes, including CBD and products used off‑label.
- Track target behaviors when you start or increase a medication.
- Caregiver: “Don’t be afraid to try medication. You may have to try a few before you find the right one, but it can improve the quality of life for people with PWS.”
23:45 Global Registry Data on medications
- Slide captures data from 600 caregivers reporting on medications that their loved ones with PWS are taking for psychiatric and behavioral issues.
- Use of medications is common in the PWS population, and increases with age.
25:00 Non‑medication approaches — psychotherapy
- Caregivers and experts report that psychotherapy is helpful for people with PWS, with some caveats and guidelines.
- Therapist must genuinely appreciate all the aspects of your loved one’s personality
- Good rapport is critical, as are structured but not rigid approaches.
- Most effective therapies focuses on support, concrete problem‑solving, and stress management
- Previous experience working with individuals with intellectual disabilities and cognitive differences is helpful in therapists.
- People with PWS can benefit from problem‑solving skills, relaxation approaches, and mindfulness training. Some online apps present kid‑friendly versions to promote mental wellness.
27:54 Environmental intervention
- Escalation of behavior problems and mental health issues could indicate the person’s environment has become too stressful.
- It is useful to look at potential environmental stressors.
- Think about 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?
- Keep in mind that once a person with PWS starts to experience mental health challenges, certain environments that were previously manageable may be too agitating or stimulating, such as school activities.
- Three areas to look for stressors include school and other activities, sleep, and food security.
- With school‑related stressors, parents may want to decrease activity level until mood/behavior has stabilized.
- Having a regular and consistent sleep schedule is key for maintaining mental wellness. Experts recommend 8‑9 hours per night, and naps if needed. Lack of sleep can trigger behavioral challenges.
- It can help to firm up existing routines and schedules and increase security around food. Mental health experts report that not locking up food can increase anxiety to intolerable levels.
- Other caregivers shared sensory strategies, including brushing techniques, horseback riding, weighted blankets, walking or regular exercise, listening to music or relaxation CDs.
33:56 Don’t wait to find a mental health provider
- Early in adolescence seek out a local mental health provider to work with your loved one.
- Find a provider who is willing to learn about PWS. If they aren’t willing, find another provider.
35:04 Words of wisdom from parents
- Reach out early if you have concerns. Don’t wait or think it’s just a phase.
- Sometimes it’s hard to realize how bad things have gotten. You can take a step back and ask for help.
- Remember, this is temporary. “They do come back to you; that sweet kid comes back to you.”
- You need a team of parents or friends, and need to take care of yourselves. Children absorb our stress.
Q & A
- For managing temper outbursts, psychiatrist Tony Holland talks about behavioral challenges, as does Jan Forrester’s tip sheets on how to manage tantrums. It helps to give people some space to calm down.
- For coping with rigidity and defiance, a structured yet flexible approach works best. It’s important to avoid power struggles.
- Some parents find behavior trackers or apps to be helpful. But Dr. Schwartz uses low‑tech approaches; it doesn’t have to be fancy.
- If parents have difficulty finding mental health care for someone with PWS, contact a local autism advocacy organization or autism clinic.
Learn more about mental health challenges in PWS.
