Anxiety

Imagine how you feel when you haven't eaten all day...

Do you feel anxious?

PWS and anxiety go hand in hand.  Individuals with PWS typically feel high levels of anxiety - all the time, and if there is a family history of anxiety, then they can often experience even higher levels.  And to be quite honest, I am becoming anxious writing this post.  What will this look like for Ellie?  I know we have family history of anxiety, and that scares me.  How will we help to calm her anxiety?  How will I cope, seeing my child worry and become anxious around food and change?

It makes me just want to crawl up in a hole, to be frankly honest.  


But, that wouldn't do any of us any good...


Regarding anxiety, there are several ways we an help Ellie cope.  Anxiety often arises when there is change or perceived change.  Obviously, we can't control every aspect of her life and shield her from all the change that could occur...but, we can provide structure, schedules (visual and oral), one-on-one supervision around food, and help her feel safe and in control.  Obviously, any change that impacts food, is something individuals with PWS worry and become extremely anxious about.  When can we eat?  What will we be eating? Where will we be?  How much can I have?  I have often read from other parents, that individuals with PWS (because they feel hungry, all the time) worry that they will not be fed their next meal or snack (especially if something in the schedule changes).  You can imagine...if your diet was being carefully regulated, and controlled by another individual (and you were hungry all the time) and you expected to be able to eat at noon...then the schedule of when you will get your next meal changes....worry, anxiety, fear, anger sets in and it is intense.  If change does occur (and it will)...individuals with PWS must be reassured that the change in one area will not result in change in another.

"The most common identifiable thing that leads to challenging behavior is anxiety" (http://www.pws.org.nz/challenging-behaviours/).

I have heard more parents mention that the food issue is not the most challenging aspect of PWS.  Diet can be controlled and measures can be taken to ensure food safety and supervision with all aspects involving food.  But, what is the one thing that they say is the most challenging aspect of PWS?  Behavior & Anxiety. So, this is clearly an area, that cannot be pushed away and tucked down deep and not addressed.

My goal as Ellie grows is to do all I can to learn more about best treatments and interventions for individuals with PWS, especially in the area of behavior and anxiety.  I think trust and structure is key in alleviating anxiety, and as Ellie grows, that is our ultimate task.  David and I will work with her to establish a calm, structured environment full of praise and trust.

Information taken from the following article:  Reprinted from The Gathered View (ISSN 1077-9965), published bimonthly by the Prader-Willi Syndrome Association (USA). Prader-Willi Syndrome Association (USA), 8588 Potter Park Drive, Suite 500, Sarasota, Florida 34238