Monday, January 3, 2011

Phases/Stages of PWS

I am beginning to think Ayden Jane could be entering phase 2A. Hmmm. Not sure what the phases of PWS are? Not sure I understand them either, but here is the best description I have found. It is off a list serve I am a part of:

1a difficulty feeding (age 0-1.5)
70/108 kcal/kg/day

1b no longer having feeding problems (age 1.5 - 2.9)
Mean age of starting this phase is 2
66/102 kcal/kg/day

2a weight gain without increase of calorie intake (2.5 -8.5)
Mean age of starting this phase is 4.5
45/96 kcal/kg/day

2b weight gain with increase of cals and appetite (age 3.75-13)
Mean age of starting this phase is 8.
45/96 kcal/kg/day

3 hyperphagia, lack of satiety (age 3.75 - adult)
24/29 kcal/kg/day

4 appetite decreases, similar to 2b (adulthood)
20/29 kcal/kg/day


Only thing that makes me think it is possible is that Ayden Jane still is not eating much. I don't have to be sure and feed her every couple of hours. She leaves food on her plate at meals and turns down foods she previously would eat whether 'hungry' or not. Just seems to be a decreased need for calories. This has stayed steady for over a week now and I don't think she is loosing weight. She is still alert, active and acting pretty normal. (whatever that is for a 3 yr old.)

I will be going to see Dr. Miller in a couple weeks for a sibling study so I am sure we will sort it all out. It really just reminds me of my other kids who just went through phases where they ate lots and then weren't so interested. Sort of like chowing down when gearing up for a growth spurt. Then ....

I think it is encouraging that AJ seems to be aware that she does not need the added food right now. So far I am still able to trust her sense of hungry... to some extent. It has been sort of nice not to have food be such a huge part of our day lately!



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