Friday, June 30, 2017

Food and a Changing Metabolism

Food is such a tricky subject as it comes to PWS kids. Well, families. Food 'rules' or routines fall into place whether they are totally planned or not. Breakfast, lunch and dinner with appropriate snacks. Quantity worked out for the individual and managed from the outside. Types of food - low carb/high fat for Ayden Jane. This includes zero grains or simple sugars and consciously choosing things like avocado. Pairings of certain foods. No fruit all by itself. So blueberries with nuts. Or apple slices with almond butter. You get the picture. It's hard for me to even remember what must seem like rules to others because we have been at this for 9 years. It's our normal.

So what happens when metabolism changes? What happens when the body can begin to use stored energy a bit and not NEED more food the second it runs out of fuel? What happens when you are suddenly awake and active more hours in a day and have so. much. energy? How do you know how much you are supposed to eat? How do you know when you are supposed to eat if you are in the middle of having fun?

These are the questions we are working through. Yes, they sound like wonderful things to be working through and they are, but they are also confusing. Ayden Jane has never had "PWS hunger". She learned to understand the cues her body gave her in regards to food and just knows what an appropriate portion size looks like. So, what do you do when the cues are different?

We have come across this twice this week. First time was when we were at the water, bouncy, obstacle course this week. It was HARD work. I did the first session with her and I was tired! She did a second session and it was 1:00 before we hit the car and ate our packed lunches. Then we stopped at a friends to swim in a pool for a bit and by 3 Ayden Jane was tired out. She wasn't sleepy and didn't say she was hungry but she was ready to just sit for a little while. We stopped for an errand and by nearly 4 I decided that even though lunch was not long ago she might need supper. It took her a minute but I said the words chik-fil-a and she decided maybe it was a good idea. After she ate she perked up and said she had no idea she needed supper already.  She followed it up with a chia bar and was asking me if it was okay. I asked her if she was still hungry and she said just a little. I told her that was her answer. A little hungry so try a little extra. She was baffled by the whole thing and has asked me about it a couple times. She can't figure out how she could have been so hungry and yet not had the feeling she usually does to let her know she needed to eat.

The next time came last night. Gary grilled and with 6 of us in the house (and one being Noah) that means grilling a lot of food. There were hot dogs, burgers, chicken, corn on the cob, asparagus and grilled apples. Ayden Jane had half a hot dog and half a burger with some corn and cherries. Later Gary mentioned the asparagus and apples and asked AJ if she wanted any. She said she had already eaten her supper. I told her it was fine if she wanted some but she repeated her supper was over and could we save some. I thought she was worried it would be too much food so I reassured her again. She got a little exasperated with me and said, "I already had my supper and I don't NEED any more. What's that word for when you are not hungry any more, you are ..... (I said full?) YES. I'm full so save some for me to have tomorrow when I am hungry."

Oh my. She is learning to read new cues in her body and even needs a new vocabulary for them. So tonight she referred back to the chik-fil-a thing. She asked me how she will know when she just needs more food and if she will get the feeling of enough if she doesn't need more food.

I wish I could answer that question by saying you can just trust your body. I honestly don't know if you can kiddo, but you amaze me with the positive attitude you keep in the midst of it all.

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