Tuesday, May 13, 2014

PWS Q and A (continued)

Yes, I have missed a day (or two) but I have not forgotten those of you who have sent questions. Still room for more and I have to say I really enjoy answering. I can get pretty boring and technical when I talk about PWS and I worry I make your eyes glaze over. But I love that ya'll love and care about AJ and our family enough to want to know. 

Question was how has Ayden Jane's 'way of eating
' affected the eating habits or even what is available for the rest of the family?

I still remember sitting them all down and letting them know, at least to an extent that food was now a big issue. That food was never to be left out. That drinks lying around were potential danger. That free eating on the sofa .. can you say chips anyone? was a thing of the past. I guess you would say I 'laid down the law.' Not welcome words to growing teens!

To be perfectly honest, I have never liked to cook. I am not a food person. I could literally eat the same boring thing every day and be perfectly content. Suddenly, after 15 years of feeding kids one way and settling into the meals we liked and I was tolerant of cooking, I had to learn to cook all over again! Arrrgghh.

Next, as I learned about nutrition and we all saw first hand the power of food to help Ayden Jane and harm her, we all realized that what you put in your body really is important. I think my kids know (head knowledge wise anyway) a lot more about nutrition than the average kiddo. As for their actual eating habits? I believe they eat less junk but I have not done a good job of helping them find new healthy options. You know, ways to cook veggies that make them more appetizing... 

I definitely 'shop the outside of the store' more now. You know, fresh food instead of boxed or processed found in the isles. Meals tend to be lean on the bread, potatoes or rice. The house has lots of nuts, fruit, veggies, avocados and things made out of coconut around. All of them now like dark chocolate (since that is often the only kind around).

I would say they all know how to eat like Ayden Jane and know that it is the healthiest way to eat. I would say they are more conscious of quantity when they eat. They are not at a stage in life where it is necessary to put their knowledge into practice, but maybe one day it will come in handy when they get past the carefree, eat all you want because you are young and active and burn off all calories age.

PWS awareness month day 8. Question I'm answering today is one I have heard before. Ayden Jane is doing so great, does that mean she is growing out of Prader Will Syndrome?

Sadly, no. It doesn't work that way. PWS is a genetic syndrome which means that AJ is missing some genetic material in every cell in her body. This missing piece is responsible for a lot. At this point, there is no way to 'put back' or 'turn on genes' to correct this. (although the some research is working on a form of that)

These missing genetics cause lots of different symptoms particularly with endocrinology and energy balance and neurology.

Ayden Jane has a team of doctors to help us manage these things that her body does not know how to control well by itself. When we have her balance at a good point, her brain fires well and she blends right in as a typical kiddo. Without the medical support her brain and body cannot keep up as they do not internally monitor and adjust.

So, PWS will affect Ayden Jane in slightly different ways as she gets older but it will always be a part of her.

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