In our latest podcast, Lauren Schwartz-Roth, 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. To listen, just click above, or read our partial transcript below.
Being stuck inside can make us all a bit stir-crazy, and I have been thinking a lot about how everyone is affected, especially our loved ones with PWS.
It seems especially important to talk about mental health now, given the current unprecedented events in the world related to the COVID-19 pandemic. This is no doubt putting extra stress on parents and people with PWS with activities and routines being disrupted, not to mention the increased anxiety and fear related to the virus. Thus, there is the potential to see greater mental health challenges and struggles in our loved ones with PWS. Hopefully your child will do well during this time, but here’s what to keep an eye out for just in case.
Many people with PWS struggle with behavior challenges and can suffer with serious mental health issues, especially in their teens and young adult years. There are higher risks in people with PWS for specific mental health challenges including depression, bipolar disorder and psychotic symptoms. But the presentation of symptoms and the course and treatment of those mental health symptoms require special considerations for people with PWS.
Last year, FPWR set out to create a PWS mental health guidebook. The full version will be available later this year, but in the meantime, we wanted to share highlights with you regarding what to look for regarding serious mental health issues, and when to get help for your child with PWS.
The information we're sharing today is available on our mental health web page as a handout.
So to start — we conducted a qualitative research study that included extensive interviews with parent caregivers and mental health professionals including psychiatrists, psychologists, social workers, and PWS behavior crisis team members. Here is what did we found:
Changes To Look For
You're probably already well aware of your child’s typical or what we would call baseline behavior. When we're concerned about mental health issues, we're looking for changes in our child's pattern of usual behavior that continues for a period of time – not just a day or two (and not in context of physical illness) but for a week or longer.
Look for changes in the person with PWS from their usual behaviors. For people with PWS, you would most likely see changes in the areas of eating, behavior, sleep, and grooming.
- Eating. Showing less interest in food or consuming less food than usual can be an indicator of a mental health issue.
For many of us, if our child with PWS has less interest in food, we might feel it is a reason to celebrate, but combined with other changes in behaviors, it could also be a red flag regarding mental health issues (of course, if your child is in a treatment study or something else is going on that could affect appetite, that's a different matter). For kids and adults with PWS, this might look like having to be called for meals, or your child wanting to delay meals. They might wander off and not finish their meal. If your child Is showing these behaviors for more than a week and they aren’t physically ill, then this is reason to pay attention. This could be the beginning of some mental health difficulties. There's no need to panic, just monitor things for a while.
- Behavior. Some people with PWS may show more or new behaviors that look like agitation or aggression as an early warning sign of mental health issues.
They might be more talkative or talk to themselves more. Keep in mind that lots of people with PWS talk to themselves as a way of processing the world or to self-sooth. But take note if it's increased, or if it becomes more negative (for example, "people don’t like me, people are mad at me").
Conversely, some people with PWS will start to be more withdrawn than usual. Maybe your loved one is generally talkative and always wanting to go do something. But now they don't show interest in activities they previously enjoyed, or say no when you suggest doing things.
- Sleep. People with PWS tend to be good sleepers, but if there are impeding mental health issues, you may find that they're sleeping less, or you may see a change in sleep pattern (for example, they may be up more at night or earlier in the morning, or doing more napping during the day). Our study found that most people with PWS sleep a lot (more than 9 hours per night) and nap daily (if they are able). Look for changes in the usual pattern like sleeping less than they usually do, getting up even earlier in the morning than usual, or getting up in the middle of the night and wandering around. What you're looking for is a pattern over a week or more.
- Grooming. A change in grooming behavior can be indicative of a mental health issue. A few examples of a loss of interest in self-grooming could be: not changing clothes, not brushing their hair or teeth, not showering or a decreased ability to care for themselves for example needing to be prompted for every step of self care. Again, I caution that we're looking for a change from typical behavior. In some cases, you might see instead an increased preoccupation with grooming by showering or washing hands excessively, or changing clothes repetitively, which can also be indicative of a change in mental health.
When there are external things that are different, like COVID-19, it can be hard to tell whether the changes we're seeing in our loved ones are indicative of a change in mental health or if it's simply our loved one's way of adjusting to our new normal. That's why it's important to look at all of these changes in context and to monitor them over time. Watch to see if the behaviors continue over a week or two weeks. Given the current stressors of today, you may try to institute a schedule or routine that you know will be calming for your loved one to see if the behaviors improve. If they don't, then there might be more reason to seek an outside opinion from a healthcare professional.
What To Do If You've Identified A Decline In Mental Health
If you're noticing changes in a few of the areas of eating, behavior, sleep or grooming, for greater than 1 or 2 weeks (and the change is not related to physical illness) it's probably worth taking your child in for a medical assessment with their primary care doctor. If your child already has a mental health provider, it would be good to check in with them as well and see if they can assess your child. Here are a few tips to help you through the process.
- Make sure a thorough assessment is done to rule out any potential medical causes of the behavior change (such as infection, medication reaction, or sleep disorder). Most of us who have a loved one with PWS know that sometimes they will have a behavior disruption for a few days before they start to show signs of illness. For this reason, its suggested you monitor these changes for longer than a few days to see if they persist.
- Provide your doctor with information about mental health issues in PWS.
- If warranted, you can also ask your doctor to seek a peer-to-peer consultation with PWSA-USA for PWS mental health concerns.
Given the challenges of in-person visits currently due to COVID-19, there are some things you can do to receive assessment and treatment if warranted. Start with the individual's primary care doctor. It's good idea to be seen by someone who knows the person with PWS. Many clinics are beginning to see patients through telemedicine so there will likely be more opportunities for that type of visit in the coming weeks. Another resource are the PWS clinics which may be able to provide some guidance.
If medication is needed to treat mental health challenges, some primary care doctors will feel comfortable prescribing it, but in the case of serious psychiatric symptoms that might be reflective of bipolar or psychosis conditions, your loved will most likely need to see a psychiatrist. You may consider asking the physician or psychiatrist who is evaluating your child to consult with one of the PWS experts as needed to expedite and receive appropriate treatment.
Some Further Thoughts About Treatment
If medication is recommended, here are a few things to keep in mind that are unique to PWS.
- The Golden Rule for Medications in PWS is: START LOW AND GO SLOW. People with PWS can respond to even low doses of medication and may have unusual or unexpected side effects as well.
- Before you start or change a treatment, identify two to three target behaviors that you're trying to address and track those behaviors to see if the medication improves or worsens them. Behaviors you could track include: tantrums (count the number per day), sleep (track the number of hours they sleep and / or times they are up at night), eating, grooming, agitation / anxiety. You can track your target behaviors on paper or use a digital behavior app.
- Also ask your doctor how quickly the medication works so you know when you might see changes.
Another point about medications: I’m not a physician and do not prescribe, but I heard over and over from the expert health care professionals and families that if there are serious psychiatric symptoms (hallucinations, mania) don’t wait too long to try medications — I know it's scary to think about using some of these types of medications, but as many stated in the study, they can be very helpful and prevent further declines in function as well as reduce social / community impacts for the person with PWS.
Serious Mental Health Issues in People With PWS
- 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 or life which might cause mild distress in or our typical children can be huge stressors for our kids with PWS – for example, a sibling moving out, change at school or in their day program (including a new teacher / aide) or loss of a caregiver, illness in a close relative, school holidays and loss of a pet can be huge stressors. And these events can have the potential to cause psychiatric symptoms (including hearing voices / psychosis and depression) in our loved ones with PWS. But these symptoms can also be successfully treated with use of appropriate medication.
- People with PWS often talk to themselves and talk to “imaginary friends.” Generally this is not anything to be concerned about — it's their way of processing the world and their day-to-day experiences. But if the amount of talking seems to dramatically increase and / or this “friend” starts being scary or mean, this is concerning and would warrant assessment by a health care professional. Sometimes the symptom of hearing voices is a temporary symptom related to stress and just needs monitoring by you and your child’s doctor, but other times medication is warranted, especially if the voices cause distress or fear in your child. So again, regardless of whether treatment is needed, it is good to get this checked out if you are noticing this in your child.
- Finally, If the person with PWS goes to the ER or is hospitalized (for anything), 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.
Things to Remember as a Parent
- Take care of yourself. Our loved ones absorb our stress. If you are doing better, your child will do better. There are multiple resources on our website that discuss self-care and mindfulness.
- When possible, team up with someone. It's helpful to partner with someone who can help you manage these issues in your child. If not your spouse, find a friend or other PWS parent who can be your “partner” and help you think through things, make decisions, be a sounding board and, listen to you vent when needed.
- Parents told me during the study that the treatments for serious mental health issues really can be helpful if you get the right medication for your loved one and you figure out how to reduce some of the stressors. Parents said things like, "Your sweet, funny kid is still in there" and "they come back" to you with time and getting the right treatment.
This is a hard topic and can be a difficult reality of PWS for us as parents to face. But as challenging as this situation can be, there's reason to be hopeful: our kids do respond to the treatments and we have some great dedicated professionals in our community, as well as wonderful parents who have been there and are eager to share their wealth of information. I feel we are blessed to have such a great PWS community.