Today we will be talking about behavior and mental illness. Kemett has UPD subtype and it is known there is a greater chance of mental illness.
At the moment, Kemett’s behavior is pretty on par with a typical 3 year old. We work hard with him on transitioning between activities, getting him to use his words when he is crying and upset about something, being flexible, pretend play and just general disobedience. So far Kemett does great on a flexible schedule. Food is on a strict schedule but he often turns down a snack to continue playing. It’s weird because as a PWS mom, it makes me so happy to hear he doesn’t want dinner because he is enjoying playing outside or with his books.
We have seen some anxiety creeping up. It’s happened a couple of times and it was hard to get him past what he was upset about. He also gets anxious when we go on a trip, and usually says he wants to go home. We have done social stories which is just a little book with what our trip will be about. This tool has been great. We’ve also started doing yoga 1-2 x a day, deep breathing and progressive muscle relaxation. I want to give him all the tools we can so that he can help calm himself. I know one day he may need medication, but I’d like to teach him mindfulness techniques before we get to that point.
Of course, I worry about this a lot and when will the other foot drop. It could happen any day that he develops an interest in food and starts having meltdowns related to food, schedule, etc. That’s why we are preparing now the best we can without knowing what the future holds.
In addition to their involuntary focus on food, people with PWS tend to have obsessive/compulsive behaviors that are not related to food, such as repetitive thoughts and verbalization’s, collecting and hoarding of possessions, picking at skin irritations, and a strong need for routine and predictability. Frustration or changes in plans can easily set off a loss of emotional control in someone with PWS, ranging from tears to temper tantrums to physical aggression. While psychotropic medications can help some individuals, the essential strategies for minimizing difficult behaviors in PWS are careful structuring of the person’s environment and consistent use of positive behavior management and supports.
We have known since diagnosis that mental health issues are more prevelant in individuals with UPD but it wasn’t talked about much until this past year. There was actually a Mental Health Summit and mental health professionals from all over came to discuss Prader-Willi Syndrome. Notes from the Mental Health Workshop
There is now exciting research regarding predictors of psychosis going on: Here.
Kemett does not exhibit signs of OCD behavior yet, either, however, this is quite common in PWS will probably develop at some point.
We are doing the best we can without knowing what the future will hold for Kemett in regards to his behavior or mental health. All we can do is fundraise for research so we can learn more about what to look out for and what to do!
Thank you for supporting us and asking questions this month!