Saturday, July 30, 2016

Interesting Summer

Obviously, if you are reading this blog you know a bit about Prader Willi Syndrome. The 'hallmark' of the disorder is supposed to be hunger ... insatiable hunger. This hunger is supposed to start at varying ages but certainly should be a part of Ayden Jane's life at this point.

We have seen the PWS hunger a few times. It generally comes when she is ill. I still don't quite understand why that is the case, but it seems Ayden Jane is not alone in her response to illness. I also see her misinterpret tired for hunger. Even those of us without PWS do this to an extent. You know, the late night munchies when what your body actually needs is to go to bed? Well, just magnify that by a ton.

Ayden Jane has learned to listen closely to her body and interpret the cues well. She refers to hunger as her brain being hungry or her belly being hungry. Her brain needs a snack sometimes between meals. She says she is not really hungry, but her brain starts to crash so she needs food. Then at meal times her belly is hungry. She is doing great with it all and has learned to recognize the brain crashing feeling before it's crashed too much and realized she only needs a small snack to be right back on track - like a blueberry bite or keto chocolate.

The interesting part this summer is that Ayden Jane is a little off right now. She is just struggling to power her typical activity, is having trouble tolerating the heat, and getting 'stuck' more than usual. It's not extreme or anything, just enough that I feel like I am banging my head against a wall a few times a day. Most people probably just notice that she is a bit slower getting her thoughts out. We are working on it and Dr. Miller has labs that will hopefully give us some clues.

I am really curious, though, because usually when she is struggling to power her little body and brain, it sets off hunger cues. This time, however, she is not hungry or concerned about food. She has cut her breakfast back to half of what she typically eats. She sometimes has a morning snack and sometimes not. She is in no hurry for lunch... It is so strange. I have had to remind her to eat. Over the past 2 months she has even lost 4.5 pounds. I know that does not sound like a lot, but it's pretty significant for a kid with PWS.

It will be interesting to see just what those labs tell Dr. Miller.

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