A week or so ago I posted about a conversation Ayden Jane was having with Dr. Miller about 'fake sugar' and drinking water ect. Ayden Jane had made up her mind to drink a cup of water everyday after that. No small feat as I have tried most everything to get her to willingly drink water!
After a few successful days, Ayden Jane wanted me to email Dr. Miller and tell her... (not sure how Dr. Miller handles all the email) Anyway in the process AJ asked her a few other questions and Dr. M told her she was going to have a conference call about a medicine that would help. Naturally, AJ was thinking about something to fix her Krebs Cycle.
Dr. M explained that this is something different that would help her not crave the sugar she can't have or even fake sugars. I had to explain what crave meant. I told her that it means to want something really bad so that it was hard to have it around and not get some, sort of like bananas. Her response was pretty awesome and makes me really glad we have chosen to feed her the way we do.
Ayden Jane was actually sort of confused. She said that the medicine didn't really make sense and wouldn't really be helpful for her. She told me she just wants the fake sugars in drinks because she hates water but has to drink something and that she doesn't crave sugar in food. That she just wants to be able to eat things without having to worry about accidentally eating something with too much sugar and then feeling awful. I know this is a concern for her as she sometimes will choose not to eat something because she just isn't sure and has things she wants to do that day. I'd say her biggest food anxiety is accidentally getting a sugar load so she likes to just stick with foods she knows make her feel good.
Now, I know that Ayden Jane is more sensitive to sugar/simple carbs than most with PWS. I don't know if this is because she has eaten this way for so long or if she would be that way anyway and would have just adjusted to not feeling great. (that's an awful thought) What I do know is that Ayden Jane is 100% happy eating the foods she is allowed. She is 2 months from being 7 and hyperphasia is not an issue. There are no locks because she doesn't need them. She is not bothered by food left on the counter and can walk past it without a thought. She can hang out with her friends while they eat cookies or candy and be totally content with a coconut square or keto chocolate. We can go out to eat and she is not concerned in the least with foods she does not eat.
Not to say she wouldn't eat more than what she needs of what she does eat. She is not constantly hungry and does struggle if something comes up and she feels hungry but needs to wait. Her body is definitely not great at tapping into stored reserves of energy like the rest of us can do. The satiety signal is definitely not great. Sometimes she will declare herself full, but it is rare. Basically, she knows when she needs food (most of the time) but would eat more than necessary if she were not using her brain (and us) to limit portions.
It's not a perfect system and I do look forward to someday freeing her from so many restrictions, but it truly is a good life. She is happy and healthy and content even though she has to work hard and be careful. She is a fantastic example of doing your best with what you have and enjoying life to the fullest.
After a few successful days, Ayden Jane wanted me to email Dr. Miller and tell her... (not sure how Dr. Miller handles all the email) Anyway in the process AJ asked her a few other questions and Dr. M told her she was going to have a conference call about a medicine that would help. Naturally, AJ was thinking about something to fix her Krebs Cycle.
Dr. M explained that this is something different that would help her not crave the sugar she can't have or even fake sugars. I had to explain what crave meant. I told her that it means to want something really bad so that it was hard to have it around and not get some, sort of like bananas. Her response was pretty awesome and makes me really glad we have chosen to feed her the way we do.
Ayden Jane was actually sort of confused. She said that the medicine didn't really make sense and wouldn't really be helpful for her. She told me she just wants the fake sugars in drinks because she hates water but has to drink something and that she doesn't crave sugar in food. That she just wants to be able to eat things without having to worry about accidentally eating something with too much sugar and then feeling awful. I know this is a concern for her as she sometimes will choose not to eat something because she just isn't sure and has things she wants to do that day. I'd say her biggest food anxiety is accidentally getting a sugar load so she likes to just stick with foods she knows make her feel good.
Now, I know that Ayden Jane is more sensitive to sugar/simple carbs than most with PWS. I don't know if this is because she has eaten this way for so long or if she would be that way anyway and would have just adjusted to not feeling great. (that's an awful thought) What I do know is that Ayden Jane is 100% happy eating the foods she is allowed. She is 2 months from being 7 and hyperphasia is not an issue. There are no locks because she doesn't need them. She is not bothered by food left on the counter and can walk past it without a thought. She can hang out with her friends while they eat cookies or candy and be totally content with a coconut square or keto chocolate. We can go out to eat and she is not concerned in the least with foods she does not eat.
Not to say she wouldn't eat more than what she needs of what she does eat. She is not constantly hungry and does struggle if something comes up and she feels hungry but needs to wait. Her body is definitely not great at tapping into stored reserves of energy like the rest of us can do. The satiety signal is definitely not great. Sometimes she will declare herself full, but it is rare. Basically, she knows when she needs food (most of the time) but would eat more than necessary if she were not using her brain (and us) to limit portions.
It's not a perfect system and I do look forward to someday freeing her from so many restrictions, but it truly is a good life. She is happy and healthy and content even though she has to work hard and be careful. She is a fantastic example of doing your best with what you have and enjoying life to the fullest.
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