Ayden Jane does not currently deal with the PWS hunger that she will likely one day. She is hungry at appropriate times and is generally always satisfied after whatever snack/meal we give her. That is all great stuff and I am very thankful.
There is still something obviously off in in her hunger/satiety cues. I notice it in a few ways.
1) She will sometimes ask if she had lunch. If I answer yes and remind her what she had then she will usually just make a comment of some sort and move on. Occasionally she is hungry and will ask for something little or even a piece of gum. At this point I can do this without concern.
2) She will eat whatever portion we give her. She is done eating more by the fact that her plate is empty than by the quantity that was on it. It is sometimes surprising how small a portion I can give her and she is still satisfied. Then some things she would eat endlessly if allowed. (I think anyway, haven't really tested that theory)
3) The other piece that is along this line is that she doesn't realize that she needs food until she is crashing. When she was young it was a very typical looking hypoglycemia and she just couldn't go more than 2 or 2.5 hours between meals/snacks. Now she can stretch the time and it is very dependent on the energy she expends. If she is playing hard (and also distracted from food) she never says she is hungry. Then you will start to see her laying down in the game or she will start to get whiny. At this point she quickly becomes uncooperative and sloth like. It always seems to hit so fast, but I am starting to realize that she just doesn't 'get' the hunger cue on time. By the time she knows she is hungry she should have already eaten!
4) There is such an importance on food in her mind. Not really quantity or time, but she has a few favorites and if we don't have them accessible she stresses. I guess it is like many of us adults and our coffee!
I am certainly not complaining!!! It is just odd. As a mom of a child with PWS, I am responsible for making sure they get enough of everything but not too much of anything. I find myself pushing her to take a few bites one meal and other times reminding her we just ate so no, we are not going to have a snack of nuts... I guess it all goes back to wanting to throw the responsibility out the window once in a while and stop thinking about the intake...
There is still something obviously off in in her hunger/satiety cues. I notice it in a few ways.
1) She will sometimes ask if she had lunch. If I answer yes and remind her what she had then she will usually just make a comment of some sort and move on. Occasionally she is hungry and will ask for something little or even a piece of gum. At this point I can do this without concern.
2) She will eat whatever portion we give her. She is done eating more by the fact that her plate is empty than by the quantity that was on it. It is sometimes surprising how small a portion I can give her and she is still satisfied. Then some things she would eat endlessly if allowed. (I think anyway, haven't really tested that theory)
3) The other piece that is along this line is that she doesn't realize that she needs food until she is crashing. When she was young it was a very typical looking hypoglycemia and she just couldn't go more than 2 or 2.5 hours between meals/snacks. Now she can stretch the time and it is very dependent on the energy she expends. If she is playing hard (and also distracted from food) she never says she is hungry. Then you will start to see her laying down in the game or she will start to get whiny. At this point she quickly becomes uncooperative and sloth like. It always seems to hit so fast, but I am starting to realize that she just doesn't 'get' the hunger cue on time. By the time she knows she is hungry she should have already eaten!
4) There is such an importance on food in her mind. Not really quantity or time, but she has a few favorites and if we don't have them accessible she stresses. I guess it is like many of us adults and our coffee!
I am certainly not complaining!!! It is just odd. As a mom of a child with PWS, I am responsible for making sure they get enough of everything but not too much of anything. I find myself pushing her to take a few bites one meal and other times reminding her we just ate so no, we are not going to have a snack of nuts... I guess it all goes back to wanting to throw the responsibility out the window once in a while and stop thinking about the intake...
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