Friday, June 24, 2011

HOW DO I KNOW?

It is well known that food, to some extent at least, rules the lives and homes of those with PWS. Now, life for us has been pretty easy in terms of food, but I am frustrated this summer. Ayden Jane is great about what she eats. She does not question that she does not eat foods with sugar in them like candy or cookies... and she knows she does not eat bread or goldfish... She is great about it.

What I have been running into is that she has been telling me a lot lately that she is hungry. She loves fruit and with all the fresh fruit in season we have lots of it in the house. Now if my other kids wanted to eat 15 servings of fruit a day I would consider it a miracle and tell them to go for it. Not so much for Ayden Jane. She also wants nuts and other things she knows are on her list of foods that are good for her.

Here is where I am stuck. We have been doing lots of swimming ect. and maybe she is truly just burning off so many calories that she needs the extra food. But maybe it is the beginning of her belly playing tricks on her and just telling her she is hungry when she does not need any more calories to burn. HOW DO I KNOW? We have had a few pretty big melt downs over food. Is it PWS or is it a hungry kid? HOW DO I KNOW? It is heart breaking to think that she feels hungry and I have to say no in order to keep her safe and healthy. It is just cruel, though, to think she is hungry because I am not meeting her nutritional needs. HOW DO I KNOW?
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3 comments:

  1. Ali Foley ShenkJune 24, 2011 at 6:25 PM

    Janet, we're going through this too right now, and I just don't know....

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  2. Susan HedstromJune 27, 2011 at 8:06 PM

    If Dr. Miller is correct with her phases, we should see an increase in weight without an increase in calories BEFORE the kids start THINKING they are hungry.

    We are in a tough stage right now. Jayden's weight is ok for now, but they don't want him to gain any more this year... so we have to maintain. The nutritionist wants us to cut back to 960 calories - that isn't very much!! I really don't want to cut back so soon but I don't want to lose control of his weight either.

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  3. Janet GulleyJune 28, 2011 at 4:12 AM

    Susan. We saw Dr. Miller for the study in April and Ayden Jane was biochemically already in phase 2b which means she should have already been gaining weight with no food increase. Instead she was eating 1200 cal./day and was at 15% body fat.

    I still don't actually count calories, but I know the kid is eating more... On one hand, I know that we have room to play with, but on the other, I don't want to increase just to have to cut back. Round and round goes the argument! So irritating.

    Hard to believe with as active as Jayden is that you have to watch his calories. I hope the balancing 2 boys is going well.

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