Sunday, September 22, 2013


September is going by so quickly.  I feel like there is so much I should be writing about, but it is all coming so fast I don't get the chance. 

One thing I will be working on in the coming week is ketones.  I am waiting for our blood ketone monitor so we can finally answer the question once and for all, is Ayden Jane generally in ketosis.  I have been sort of slow to measure and track ect., but I just felt like I can tell what Ayden Jane needs food wise.  It is time to figure out if what I see on the outside matches what we think is going on in the inside.

The 'we' in that statement includes myself and a few crazy smart medical minds.  (and good friends)  Here is a very simplified (because that is all I can handle) version of what is being discussed/investigated by these smart folks.  We know that people with PWS have an impaired carbohydrate metabolism.  Remember Ayden Jane and her Krebs Cycle?  So, if they are not good at using glucose for energy, what do they use?  Fats.  Yep, the dreaded word in the American Diet. 

The brain can use glucose for energy, however, in the absence of glucose the liver can metabolize fats and turn them into ketones.  The PWS body has trouble using the glucose properly (although I don't entirely understand the details) so that the brain and body are not fully energized and much of the glucose is stored as added fat mass.  The PWS brain and body seem to use ketones for energy efficiently so now you have a happy brain and body.

So, this is the basis for feeding a person with PWS low carb, and I am talking no grains or sugars and generally low glycemic index fruits and veggies.  Some parents are sticking with as low as 20 grams of net carbs per day.  That is hard.  The diet is actually called a ketogenic diet and is used in treating patients with seizure disorders.  Yep, good for the brain.  We are not likely on a true Keto diet, but likely close.  Ayden Jane eats too much fruit and I add honey to a few things and she has a few carbs in her supplements....  But we definitely have never feared the fat.  In fact, avocados and flax meal and butter and eggs and nuts have been her staples since the start.

So, how does AJ fare in all this?  I discovered this week that she is the oldest kiddo to start eating this way pretty much from the start.  I did not set out to be a rebel or ground breaker.  It was not even my idea to feed her this way!  lol.  I just read what a couple of these brilliant folks wrote and watched Ayden Jane.  She made it absolutely clear that grains and sugars crashed her system.  She made it obvious that she had lots of energy and felt good when she ate fats.  So I just kept it up.  I didn't have any other nutritional guidance until she was 2.  That was the first time Ayden Jane saw Dr. Miller.  She ran an analysis of her diet and gave it a stamp of approval as well as being thrilled with how AJ was doing.

So, coming full circle, I realized this week that it is important to know what is actually going on inside Ayden Jane.  Not just think I know.  I don't expect to change anything but Ayden Jane could provide some information to these smart ladies.

What they are thinking is that Ayden Jane has learned to use fat very efficiently.  Almost preferentially so that her metabolism slips into ketosis quite easily.  Among the questions are is she in ketosis even though she is not on a diet that would create ketosis in a typical person?  What level are her blood ketones?  What level are her ketones when I feel she is really 'on'?  What is she burning for fuel when she goes and goes and goes?  How do her ketones fluctuate over the course of a day?

So, as Ayden Jane works on getting ready for her 5K, I will be using her as an information source.  Good thing she thinks having her blood checked is cool ;)


  1. Wow. This is so interesting. What types of fats are you feeding her? Avacados and flax were mentioned.

  2. We shared this on our FB page ( and have some parents who would like to know what a typical day looks like on this diet. Could you share a typical breakfast, lunch, dinner, and any snacks?