Ayden Jane asked Dr. Miller why she can not eat sugar (carbs). Dr. Miller gave her the same answer I have given her. "Your body can't use sugar." Ayden Jane finally got to ask Dr. Miller the bigger question. But why can't my body use sugar right? Dr. Miller told her it was complicated and asked her if she wanted to see a picture. The diagram she showed her was of the Krebs Cycle. I don't think it was exactly this diagram, but I don't really understand it anyway so ...
She told Ayden Jane that is was the diagram of how bodies get/use energy. The problem is that in Ayden Jane's body sugar cannot enter the Krebs Cycle and be used for energy so all her body can do with it is to store it in fat. Additionally, when she eats sugar and starts to store it, her whole Krebs Cycle does not work very well and even the good food can't be used as it should. As her body would then be lacking in energy she would feel more hungry.
Now, obviously the whole process is way more complicated than that (and quite frankly this is just one of issues in PWS) but it was perfect for Ayden Jane. She totally got it. After we left the office, I let AJ have chicken fingers for lunch. She asked if the 'crispy' was bread. I told her it was and she informed me that she can't really eat that cause bread is sugar and sugar can mess up her "energy circle." We decided we would pull off what we could and just not eat them often. Impressive!
Since then she has asked why Noah's Krebs Cycle works but hers doesn't. Uggg. Do I really have to explain genetics to a 5 year old? She also wants to know how we learned that it doesn't. She asked how Dr. Miller knows those babies we met can't use sugar when they are just babies.... Dr. Miller got off easy.
She told Ayden Jane that is was the diagram of how bodies get/use energy. The problem is that in Ayden Jane's body sugar cannot enter the Krebs Cycle and be used for energy so all her body can do with it is to store it in fat. Additionally, when she eats sugar and starts to store it, her whole Krebs Cycle does not work very well and even the good food can't be used as it should. As her body would then be lacking in energy she would feel more hungry.
Now, obviously the whole process is way more complicated than that (and quite frankly this is just one of issues in PWS) but it was perfect for Ayden Jane. She totally got it. After we left the office, I let AJ have chicken fingers for lunch. She asked if the 'crispy' was bread. I told her it was and she informed me that she can't really eat that cause bread is sugar and sugar can mess up her "energy circle." We decided we would pull off what we could and just not eat them often. Impressive!
Since then she has asked why Noah's Krebs Cycle works but hers doesn't. Uggg. Do I really have to explain genetics to a 5 year old? She also wants to know how we learned that it doesn't. She asked how Dr. Miller knows those babies we met can't use sugar when they are just babies.... Dr. Miller got off easy.
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