1. She cannot seem to reset her thermostat. 3 times now in the past 24 hours she has been running around playing and completely overheats. She then turns pale, beyond pale, and turns to mush (I know that's not a very scientific term, but it is a perfect description) It happened with her PT yesterday. Ran out to greet her was doing great, rode her bike a few minutes and then started to become pale and stare... Came inside and she fell asleep while working on the exercise ball! Her skin is warm and sweaty, but she just doesn't really cool down. She falls asleep at this point no matter what you try to do with her. It is like going back to infancy with temp. We are planning on a swim this afternoon. It is an indoor pool that she could last about 20 min. in during the winter before she was too cold.
2. She says she is hungry, eats 1 or 2 bites and asks to save it for later or wants to throw it away. She will eat fruit and the mixture of avacado and greek yogurt that she loves. Other than that, I make her eat a few more bits of chicken... but have been leaving it at that. She MIGHT be eating half or her usual. She even refused to finish almonds and pistachios! She has been eating this amount for 9 days since she got sick.
It is so hard not to panic when these sorts of things happen. I know in my head that her 'thermostat' will likely reset, but I also know that what is going on is actually very common in PWS. What if we just triggered it and it is here to stay? It is so hard to watch her go from so happy and full of life and then just melt into a pale puddle of mush.
Apparently, you can run but you cannot hide from PWS.
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