There is a wonderful book called Brain on Fire about a terrible neurological disease not all that different from Brayden's PANDAs. But this post is just a glimpse into how PANDAS effects Brayden.
"Mommy, why can't I get to sleep anymore? I used to but now it's like I'm not even in my own room anymore. If I can't hear anyone out there it's like I'm the only one home. My legs itch, I feel sick and I just want it to be morning. Please don't go to sleep before me. Why I can't I fall asleep?"
I want to say "My dear Brayden. You can't sleep because the strep monsters have your brain on fire. These monsters are not under your bed. They are not in your closet. They are in your brain. They are attacking your basal ganglia and depleting the dopamine your body needs to help you fall asleep. They are messing with your emotions and behaviors. They are making you think that all food is gross so that your little tummy is growling right now with a hunger that I can't take away. We are trying to fight those monsters but it takes time. Your mainstream doctor doesn't see those monsters. Your other doctor who knows about those monsters is too busy helping other kid with monsters. So my dear Brayden, you can't sleep tonight because of strep monsters and unlike other monsters that kids have, a spray bottle of monster eliminator will not get rid of them. But I promise your mommy will not stop trying to get rid of them and one day you will sleep soundly in your own bed safe and secure."
But I don't say any of that. I say "Little buddy, mommy has made you a comfy bed in our room right next to our bed." I get a big smile, and within minutes, he is asleep.
No comments:
Post a Comment