Hyperphagia or the feeling of abnormal, constant hunger is one of the most life-threatening symptoms of Prader-Willi Syndrome. This typically begins to occur when children with PWS are 8-10 years old, but varies for every individual.
Over the years Siena has progressively become more and more fixated on food, but we have not yet seen food seeking behaviors that some of her peers with PWS have experienced. While, as of now, we do not have the need to lock our refrigerator, freezer, pantry or trash can we know many families that must do so to keep their child with PWS safe. The insatiable feeling and obsession with food can lead to obesity, diabetes and intestinal issues that can lead to death.
I cannot say Siena has a constant feeling of hunger at this point, but I can say that food is an obsession for her. She wakes up asking if it is “wake up time” so she can have breakfast. She is very aware of all food around her at ALL times, and food is constantly on her mind. There have been a few times in recent weeks that we have found her with food items we did not say she could have, in areas of the house they should not be. Now, listen. I have two other children, and so I know taking food without asking is not uncommon. But, when you find your child who has PWS with food they snuck out of the pantry, well it is a sinking feeling that is hard to describe other than just pure worry.
Because the symptoms of PWS affect every individual differently and some of these symptoms manifest over time, we must ALWAYS be on top of our game and ready for anything.I came across this article and wanted to share. Thank you for reading and your support. xo https://themighty.com/…/prader-willi-syndrome-what…/…
If you would like to donate to Siena’s fundraising page for the Foundation for Prader-Willi Research here is the link