We have had Erin on a combination of Sugar Busters and The Omega Plan pretty much since she began eating solid food. Sugar Busters is pretty much the same as South Beach. The Omega Plan emphasizes the Mediterranean diet with extra-virgin olive oil, nuts, whole grains, etc. In addition to that, we avoid artificial colorings/flavorings and artificial sweetners. We are not completely gluten/casein free, but we are pretty close. We have found that when we keep her off of wheat/dairy, that she gets sick less often and when she does, she gets better quicker. It seems especially important with respiratory issues. We use soy or rice milk, sometime almond milk for a change. All drinks are diluted, usually 75% water. Whenever we can, we use organic foods. Our meat is chicken, turkey, and fish, with occasional beef. We do not give Erin pork. With as many substitutes for meat as there are available, we have found plenty of choices.
One other things we do is try to keep her blood sugar level. We make sure she doesn't go longer than three hours without eating something. It's the same principle that Lauren taught me in pain management. Instead of waiting until your pain overwhelms you, take pain meds on schedule to keep the pain in check. The same could be said for Erin's diet and PWS. We don't have to wait until the hunger strikes. Essentially, we chase the hunger with a good snack about 3 hours after eating and that keep the edge off of things. Erin's food is important to her, but she doesn't sneak/forage for food and never has. She eats slowly and will tell us that she's full. There are certain foods that she doesn't like and won't eat–mostly watery ones like watermelon, cucumbers, zuccini, etc.
Lately, we've been seeing the most incredible thing. She looks at her plate and will say, "Mom, Don't you think that's a little bit too much? Maybe we should share it." It literally takes my breath away to hear her say that. She did that the other day at a restaurant when the waitress brought her a plate w/some chips that we didn't expect. She had me take half of them off of her plate because it was too much. Who among us can give up chips? She got a major hug for that one!
What that comes down to for us us a diet of meat, vegetables, fruit, limited whole grain-based products and extra-virgin olive oil as our fat. The exceptions we make are for parties or special events when the social component is as important as the diet. In those cases, we agree that since we know that we will have more calories at these events, we will cut down before and/or after making things pretty much balance out. For example, this morning we were talking about going to a birthday party this afternoon. Before I even said anything about the food, Erin said, "Mom, They'll probably be having cake at the party. I'll just have some yogurt for lunch." Knowing that she is already thinking about this on her own is thrilling to me. She understands that she needs a combination of carbs and protein at every meal or snack. She also knows that her body needs for her to limit her amounts. To see her doing this on her own totally amazes me to no end. My hopes and my prayers are that this will continue and serve her well throughout her life.
I keep thinking I'm making my last point, and then I think of something else. 🙂 One other thing we know is that insufficient sleep causes carb cravings. If our children w/PWS have poor quality sleep, causing them to crave carbs during the day for energy, this is making a difficult situation even more difficult. Increasing the quality and quantity of their sleep goes a long way toward helping with hunger. We shot for 10-11 hours of sleep a night. We can't control what time she wakes up (usually at 6 a.m.) but we can control what time she goes to bed.
Now here's the kicker…This didn't happen overnight. Erin is 9 1/2 and we have used so many strategies and programs with her over the years. We do think we have her diet straight, but supporting that diet are years of work in calming her central nervous system and essentially rewiring her brain. That, to me, is the foundation of the success of the diet. I have written many times about listening programs, sensory integration, interactive metronome, central core work, yoga, qigong, and all the other strategies we have used to
support strengthening her body's ability to organize itself.
Putting all of these things together has been my life for almost 10 years now and I'm really happy with where we have come out with this. We have PWS issues to deal with, residuals that make life tricky, but it's nothing that we can't handle. We keep working on our challenges and finding ways to support change where we need it. So many answers are out there, just waiting to be plugged in where needed.
So that's our story at the moment. Man, how I love that girl!