Q. How do you structure your daughter's meals and snacks - do you keep her on a schedule?
A. Yes, S is very much on a schedule. She eats about every two hours or so, except for the hours between dinner and bedtime. She has three meals a day and two snacks.
In order to be successful at managing the PWS lifestyle for S, we had to do this. There could no longer be a pattern of just open snacking all day long - not for us, and not for her sister, either. K was only 4.5 years old when S was born, but by the time S turned 2, we were on a schedule. We all eat at the same times - if S can't eat, then no-one eats. It may sound harsh - and believe me, there are many times when I regret having skipped a meal, because I am of course feeling incredibly hungry but I know it would be a mistake to eat before S can eat too - but this has worked very well for us, and it is a system which I recommend to any other PWS families I have opportunity to speak with, especially if there are other children in the family. The child-with-PWS needs to have it made clear, as early on as possible, that they cannot eat or snack all day long - this is so important to teach them, because of course they will be getting that hunger signal constantly. I have tried to explain to S that the signal is just a mistake - that it's Prader-Willi Syndrome tricking her into thinking she's hungry. I've even tried to explain to her that her stomach still has food in it from the last time she ate, that her stomach needs at least two hours to digest before putting more food in...at this point she is too young to really get these explanations. She may not be able to really understand PWS until she's much older, and perhaps not even then, so trying to explain it to her may or may not help.
So, the very best thing parents of children with PWS can do, is to get on a schedule for eating and snacking. That way, the clock becomes their ally - when their child begins to ask about eating and becomes anxious (as I would too, if I felt like I were starving and were worried about obtaining more food), the parent/caregiver can point to the clock and say, we will eat again in _____________minutes. I used to use the timer on the microwave or oven, because setting the timer for the next time S could have something to eat seemed to help her think about something else for a while. It was as if the timer was then doing the worrying for her, and she could do something else and just wait for the beep. She now knows how to tell time - plus we have chiming clocks in the house - so she doesn't need the timers as much anymore. Getting on a schedule of eating every two hours or so also helps to keep the blood sugar levels constant - so that whatever intensity of hunger S is feeling isn't made more extreme by a huge dip in blood sugar levels. There has to be structure to the eating schedule for kids with PWS, because food is, ultimately, everything to them. Yes, they do have hobbies, and can do some of the things other kids can do - but as a parent I do not ever, ever mess around when it comes to food with S. I have learned to be prepared, to take snack with me if necessary, to plan outings/errands around the time between meals and snacks, because I understand what part food plays in S's daily life. It's not always fun, and I've spent more time thinking about "food" in the past 7 years than I ever have before, but thus far it has been manageable, thank God.
Later (and thanks Rachel for the question!),