When is it the right time? At what age? At what cognitive level? Will he even understand? Will it make him more anxious? (Because EVERYTHING does.) Will he just perseverate on it and talk about it over and over and over? Or will it bring relief—as in “oh, now I understand why I talk about food all the time…” It was a Friday night in November. Luke, our oldest, was celebrating Continue Reading
The Air He Breathes
It’s his very own. It’s not like yours and mine. He thinks about it. ALL the time. Our air gives us life and breath and oxygen and growth. His air could lead to death. In Prader-Willi syndrome, at some point in childhood, hyperphagia sets in. Hyperphagia is experienced as a chronic hunger, or never feeling full. It’s an obsession with food, which leads to excessive overeating, and a Continue Reading