Monday, April 13, 2015


Hunger and satiety signals in Prader Willi Syndrome are known to be off. This we all know... I'd say for Ayden Jane the hunger signal never tried to take over but she sort of felt hungry as her first response to lacking energy. Often this was just when she was tired - sort of like when we all want to munch late at night. (we know we aren't really hungry...) or bored... The good thing is all I needed to do was remind her she just ate and she would move on.

On the flip side, I don't know that I very often heard Ayden Jane say she was full. She was done and not hungry when her plate was clean but she didn't really feel full.

Since last fall when Ayden Jane gave up artificial sweeteners (or it could be lactoferrin or the addition of MCT ... but I think it is the sweeteners) Ayden Jane has slowly started to know when she is full. She has said she is tired and chosen not to eat, just to rest. She asks a lot of questions like, "should I be hungry?" Most of them are her way of confirming what she thinks her body is saying.

Over the past few weeks I have tried to let her read her own body and be more in control of when, what and how much food she needs. Honestly, it is a little scary. Letting her choose to play through lunch and learn to realize when it is getting too long and she HAS to stop and eat. Giving her a little more leeway in what she eats. She has asked me a few times lately to check her blood. She is trying to understand how to read all those signals that the rest of us take for granted.

So far she is doing great. Obviously, just like any other 7 year old, she is not totally on her own as it comes to food, but I am trying to give her a typical amount of independence, after all, that is our long term goal. It seems like the signals are there, just weak. She has to pay close attention to her body to read them correctly but she CAN do it. I'll take it!

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