Diet

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From my reading of late and my old country doctor's advice, we have this quote, "Eat breakfast like a KING, lunch like a PRINCE, and supper like a PAUPER." This is in reverse of the typical American order of things but it makes so much sense. Add that to my further reading that recommended breakfast be protein-dense, lunch a little less so, and supper be carb-dense. The rationale is that the carbs raise metabolism during sleep and help burn off fat, plus carbs help you sleep better. That improved sleep will cause less food-cravings during the day and thus help control weight. The slower-burning protein coming from breakfast and later at lunch will release energy during the day when we need it most. So, you combine the "when" and the "what" of eating to get better results.

This makes so much sense to me and is sure worth a try. We have found that a light supper works best with Erin when we are trying to lose/maintain weight and adding the carb-dense foods may help that happen even easier.

Contents

Sample Diet #1

This is a sample of Kian's diet. We are always tweaking it.

For breakfast: 2 omega-3 eggs scrambled in canola oil, half a banana, a few sips of skim milk

lunch: Stonyfield fat free yogurt, a couple of tablespoons of lentil soup, a few sips of skim milk

dinner: Stonyfield fat free yogurt and some strawberries and a few sips of skim milk (our dinner would be a dark green salad with vinaigrette, baked salmon, and strawberries)

Kian drinks a lot of water throughout the day. He doesn't really snack, except maybe bananas. At this point he shows no interest in food. Any snacking he does is really related to our eating. So, anything we happen to be eating as a snack we offer him (fruit, popcorn, yogurt). We offer him whatever we eat for dinner at well, but he is not a big salad eater and professes to be a vegetarian.

Kian also gets 1/2 g of fish oil in the morning and 1/2 gram of fish oil at night. Kian is 2 1/2 and is 50th percentile for height and 50th percentile for weight.


Sample Diet #2

Here are some of the foods that would work for us.

Breakfast: turkey bacon, eggs/egg-beaters, high-protein/high-fiber Kashi cereal, cheese (once a week only), tofu-based sausage (Boca, etc.)--plus some fruit

Lunch: almond butter on fiber crackers, turkey on triscuits, peanut butter on apples or high-fiber waffles--these plus fruit and/or vegetables

Supper: Fruit and vegetables, brown rice, high fiber cereal, oatmeal, brown-rice pasta, potatoes (yukon gold, usually), sweet potatoes...I still add some protein for supper, just not much, because even though I want to help with sleep, I am still concerned about avoiding blood sugar spikes.

I'm sure there are a zillion other combinations, but these are what came to mind first.

What we've seen so far....We've been doing this for only a few days and we're coming out of a sinus infection so she hasn't been feeling so good, but I can clearly see that her sleep is better. She woke up a couple of days ago and said, "Wow, Mom! That was the best sleep I have ever had. No bad dreams. I feel refreshed!" (That's the old soul in her coming out with the "I feel refreshed!") She falls asleep quicker than usual, and that's saying something since she's always fallen asleep quickly. The other thing I notice is that she is sleeping more soundly. I check on her a couple of times before I go to bed and before, as soon as I walk in her room, she would often wake up, sit up and kiss me, then go back to sleep. Now, I can walk in, straighten her covers, stumble over her shoes, etc., and she still sleeps.

I haven't checked her weight this week (bad PWS mom!) but I will this weekend and see how that has gone. We haven't had good experiences with carbs to date so maybe I'm avoiding this part of it. :) I'll let you know how it goes.

So far, I like what I see in terms of sleep at night. What I am watching for is sleepiness during the day. She has been using a decongestant because of this lousy sinus infection and that makes anybody sleepy. I've noticed her being a little draggy during the day so now that we are off of the meds and trying to wash them out of her system, I'll be watching her energy level closely during the day, also any changes in hunger patterns. More news at 10....

Incorporating flax

You can also buy cinnamon flavored flaxseed oil, which I like. I put it on toast in the mornings for my breakfast. My second born also liked it that way and had it as breakfast for years. Then she decided it was yucky. ;-)

We do heavy protein (2 omega eggs) with Kian in the morning.

One alternative to flaxseed oil is ground flax meal. This must also be kept refrigerated. We put this in Kian's yogurt and he likes to mix it. Plus, you can bake with it and substitute out a lot of other fat when baking. I do this with banana bread on special occasions and the kids like it. Kids at school like it as well. They have no idea how healthy their birthday treat is!

Oh, and one other thing. In Chicago we can buy yummy Natural Ovens breads that are baked with flax meal and have high flax content. We can also get flax meal frozen waffles. Both of these are very popular at my house.

Importance of Protein

Yesterday we had a pretty horrible experience that we are trying to learn from. Kian’s BMI is 50th percentile and we don’t really limit his portions, but we do control the food we put in front of him. Typically we feed him something like:

Wake up: ½ banana Breakfast: egg scrambled in canola oil, ½ cup skim milk, ¼ cup homemade brown rice pudding Snack: handful of cheerios and a few sips of milk Lunch: hard boiled egg, ½ cup fat free yogurt, ¼ cup vegetable soup, ½ cup skim milk Snack: ½ banana Dinner: ½ cup fat free yogurt, ½ cup brown rice, few bites of fruit, few bites of meat, 1 cup skim milk

Yesterday we ran out of eggs for the first time in maybe 2 years and we fed him:

Wake up: ½ banana Breakfast: few bites of skim milk yogurt, ½ piece of whole wheat toast, 1 cup skim milk with a bit of chocolate Snack: ½ cup of dried blueberries Lunch: ¼ cup cottage cheese, couple of bites of peas

At no point did we limit what he ate (other than when he intentionally spilled the rest of his dried blueberries allover the back seat of the car!). In other words, he chose when to finish those meals and there were things on his plate that we gave him that he chose not to eat (fruit, hard boiled eggs, turkey). I would also note that he was a bit snuffly and he had some GI thing going on (diarrhea).

!t 2:00 (1 ½ hours after lunch) he had his first (ever in his life) huge temper tantrum, yelling over and over that he needed to eat and that he was hungry, really hungry and that he wanted food. We gave him a banana. He inhaled it and continued to scream that he was hungry, really hungry.

What made this worse was that we were meeting with our endo at the time. Kian was sweet and compliant and funny through 3 nurses and one resident. Then Dr. Carrel walked in and within 5 minutes Kian was a different boy. It was bizarre and scary and a bit embarrassing since we had just told 5 people that Kian doesn’t have hyperphagia. Unfortunately, Dr. Carrel saw Kian as the “typical” kid with PWS with behavior problems, and perseverance and hunger.

We drove Kian home (3 hours). During this time, he was either complaining of hunger or eating or sleeping. On the way home we stopped by the grocery store and bought eggs and I immediately made him two scrambled eggs. He had that and ½ cup apple sauce and a few bites of skim yogurt for an early dinner. He was very happy with dinner and said yum a couple of times during it. After dinner he was our regular little boy.

Of course, this could be the beginning of a life of behavioral problems and hunger. But, pushing those fears aside and concentrating on what is in front of us, I wonder, if maybe the behavior/hunger may be the result of the difference in his diet. Typically, his diet is relatively high protein and low carb. Yesterday he was high carb/sugar and low protein, I know that Rachel and others have commented that their kids have had problems with carbohydrates before, but yesterday was shocking to me.

Oneida has notes here: http://www.pwsdots.org/ResearchNotes/ModifiedProtein-sparingFasting

And she highlighted this old abstract for me yesterday that I pasted below. Anyone else have anything to add to these observations? One more thought. I do not think that this emphasis on protein is commonly discussed. If I remember the red, yellow, green diet correctly, the emphasis is more on calories and what kids can’t have, not on what kids should have. I am wondering if anyone else has noticed what I have noticed. If so, do you think that some of our observations warrant more research and/or a paradigm shift?

N Engl J Med. 1977 Apr 7. Metabolic aspects of a protein-sparing modified fast in the dietary management of Prader-Willi obesity. Bistrian BR, Blackburn GL, Stanbury JB. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=840278

Four adolescents or young adults with the Prader-Willi syndrome (hypotonia, mental retardation, hypogonadism and obesity) received a protein-sparing modified fast consisting of 1.5 g of meat protein per kilogram of ideal body weight and meeting vitamin, mineral and fluid requirements. Evaluation of nitrogen and energy metabolism revealed the development of starvation ketosis and a positive nitrogen balance. Serial whole-body potassium measurements in two patients confirmed preservation of lean tissue despite continuing loss of weight. Clinical diabetes mellitus in two subjects was rapidly ameliorated by the regimen. Short-term weight loss greater than 18 kg occurred in three of the four subjects, and reduced weight persisted during observation periods of 26 to 44 months. This degree of outpatient diet adherence by mentally deficient subjects, who do not normally experience satiety, suggests that hunger is eliminated or at least reduced by modified, protein-sparing fasting.

High Protein for Infants

My daughter is now 10 months and was diagnosed at 8 months with pws/upd. We went to a genetics follow-up and found that between 6 and 8 months her growth curves had crossed. At 6 months she was 60th percentile in length and 20th in weight. At 8 months, she was 25th in length and 50th in weight. I actually made them measure her length again because I could not believe it.

I am an avid reader so I immediately started the search for some sort of answers... I realized that at 6 months when all looked good, we began solids. They consisted of cereal, fruits and veggies. Carbs began to replace formula and skewed her diet away from protein and fats. I threw out the cereal and replaced it with eggs, cottage cheese, plain yogurt, avacado... Her favorite is actually plain yogurt with a bit of maple syrup, flax meal and chopped up egg whites!

We did manage to get started on GH 6 days ago, so we are really moving forward and I am beginning to breathe.

Yesterday, we had her well-baby check. She is now back to 50th percentile for length and down to 25th in weight. She has gained 5 ounces in 2 months and eats like a trooper. She is alert and playful. She sits, pulls to her knees, stands for long periods to play, creeps, is into everything, plays peek-a-boo, waves bye-bye and pulls out every trick in the book to get her siblings to play with her.


Paleolithic Diet

In general, my basic dietary approach for everyone (not just those with weight issues or PWS) is to divide an appropriately sized dinner plate (large for large men, small for children, etc.) into thirds. One third of the plate is protein (eggs, fish, lean meat) and the other two-thirds is non-starchy veggies (e.g., no potatoes) and leafy greens. No grains (bread, rice, pasta, cereal, etc.) and it's best if legumes are avoided, too, given that, like grains, they contain lectins and phytic acid. If weight is not an issue, squeeze in 1/4 cup of nuts such as walnuts (note that peanuts are actually a legume) and 1/4 to 1/3 cup of fruit (berries, apple, avocado, etc.). If there is still hunger after the plate is cleaned, add more veggies and/or salad greens until full. Salad dressings, sauces, condiments, etc. should be sugar- and grain- free (e.g., vinaigrettes, lemon juice, etc.) and the use of oils (preferably some kind of nut oil or olive oil) should be sparing. Such a dietary approach provides adequate protein and good fats, ample vitamins, minerals and "roughage," high levels of satiety, and sustained energy.

We modern folks are not used to veggies and greens for breakfast, so I suggest something like eggs and/or some form of lean meat together with a small amount of fruit, e.g., one-half apple, 1/4 to 1/3 cup of blueberries, raspberries, etc., or a roughly 2:1 mix of walnuts and raisins, currants, etc. One of my daughter's favorites (non-PWS) was "surprise hamburgers" - two lean beef hamburger patties with a slice of tomato, pineapple, etc. between them and the edges squeezed together. Both of us love ceviche for any meal (ceviche is a cold soup of diced fish marinated in a mix of lime or lemon juice, diced tomatoes and onions, cilantro, and hot sauce to taste; I sometimes also add diced carrots.

My daughter (non-PWS)was also used to rather weird snacks such as pemmican and rollups made with sliced turkey or chicken and nut butter, salsa, guacamole or chutney, as well as quick combos such as a chicken leg or hard-boiled eggs with 1/4 apple. Deviled eggs made with salsa, guacamole or chutney were also a big hit with her. We also nibbled a lot on homemade trail mix made with various nuts and a sprinkling of dried coconut and small amounts of dried fruit (apricot, apple, cranberry, etc.). Pemmican (a mix of powdered jerky, rendered suet and dried berries) is very energy dense and doesn't need to be refrigerated, making it a great travel, trail or bike snack. Jerky and biltong are also good snacks. I had trouble giving up dairy back when my daughter was young, so snacks also included such things as a slice of (real) cheese with nut butter or a 4:1 mix of cottage cheese or plain yogurt and berries, pineapple or unsweetened applesauce. The main thing is to make sure that the protein outweighs the carbs.

I generally try to limit fruit to the equivalent of one cup per day. In general, fruit is the place to cut back if weight becomes an issue. My experience is that folks tend to go heavy on fruit when switching to a lower-carb diet as a way of making up for the missing sugar rushes, so that's something to be aware of and try to avoid.

Regarding fats, it should be noted that wild game typically is much leaner than modern, factory-farmed meat animals that are deliberately bred and fed to be high-fat (well-marbled). As a result, protein choices should favor low fat meats such as chicken, turkey, lean beef cuts and ground beef, etc. and high fat cuts like bacon, ribs, etc. should only be indulged in occasionally if at all. Range-fed venison (from areas free of chronic wasting disease) and buffalo are great but definitely pricey.

Fish are wonderful sources of protein and good fats and it is really tragic that they are now so contaminated with mercury, PCBs and other environmental pollutants that their intake needs to be restricted. The following sites provide guidance in choosing fish with lower levels of toxins -

Monterey Bay Aquarium's Seafood Watch - http://www.mbayaq.org/cr/seafoodwatch.asp Environmental Defense's Oceans Alive - http://www.oceansalive.org/eat.cfm?sitecode=edhp2 and http://www.oceansalive.org/eat.cfm?subnav=healthalerts Natural Resources Defense Council - http://www.nrdc.org/health/effects/mercury/guide.asp

For those concerned about calcium intake, nuts typically contain a good amount and nut milks make a great milk substitute. Commercial nut milks are typically heavily sweetened but they're easy to make at home - soak a cup of raw, unsalted almonds, walnuts, macadamias, brazil nuts, etc. overnight and then blend with 2-4 cups water depending on the consistency you like (less water results in a whole milk-like consistency while more water gives skim milk-like results) and filter through cheesecloth or cloth coffee filter (use the dregs as a nutty flavoring for meats, salad dressings, etc.). Cinnamon, vanilla, nutmeg, etc. can be used as flavorings. There are other nut milk recipes at http://www.paleofood.com/nmilks.htm, but I would reduce the amount of honey, maple syrup and/or fruits used in some of them. There also used to be book of nut milk recipes but it seems to be out of print, although you might be able to find a used copy. If you have the money for one, the Vitamix blenders are great for making nut milks and butters, but regular blenders also work fine for making nut milks if you go a bit slower with adding the nuts. (Btw, walnuts are considered a "brain food" in traditional Chinese medicine and parents in Asia will often buy their children a bag to munch on while they're studying for big exams.)

I am not a big fan of soy, especially for children. As noted above, legumes contain phytic acid, which significantly impairs the absorption of calcium, iron, zinc and magnesium. Equally important, I do not think that little boys and girls should be getting the hefty dose of phytoestrogens that soy contains, particularly given the steadily growing epidemics of early puberty in girls as young as two and gynecomastia (breast development) in boys, which is probably due for the most part to significantly increased exogenous estrogen exposure from pervasive pollution by hormone disrupting chemicals and greatly increased soy intake in the wake of the huge advertising campaign by major food processors to convince consumers that large amounts of dietary soy are "heart healthy," etc. (Incredibly (at least to me), the response of the Lawson Wilkins Pediatric Endocrine Society to the premature puberty epidemic, published in Pediatrics, was simply to lower the age at which puberty is considered normal.)

Someone asked privately if I recommend the Atkins Diet; the answer is no. There are some affinities between the Atkins Diet and what I suggest and it's certainly an improvement over the high-carb SAD approach, but my take on Atkins is that there's too much saturated fat and reliance on processed foods in it. What I suggest is called the paleolithic or hunter-gatherer diet and is based on trying to mimic the unprocessed foods and protein-fat-carb ratio typical of hunter-gatherer diets. The theoretical underpinnings are discussed at http://www.paleodiet.com/ and there are many recipes at http://www.paleofood.com/. Two good books are Neanderthin by Ray Audette (a short, easy-reading intro) and The Paleo Diet by Loren Cordain, PhD, of Colorado State University (see amazon.com links below). Cordain's web site (http://www.thepaleodiet.com/) is information-packed and well worth spending some time perusing.

My experience is that it's usually best to gradually transition to a lower-carb diet in order to give the body and mind time to adjust. Breakfast is a good place to start, as the body seems to especially like starting out the day with adequate protein; many of my clients used to remark how surprised they were by the sustained high level of energy they had throughout the morning by adding protein to their breakfast while cutting out the Cheerios, bagels, OJ, etc. After you've conquered breakfast, you can move on to mastering lunch, dinner or snacks, and so forth.

No Cookies

Today Kian came home from school sluggish. He ran in to hug me, but his brain was slow and he was really slow responding to my questions. When I asked what he did today he said there was a birthday. I asked if he had chocolate, but he said no, he had a cookie. Perhaps it was a cookie or perhaps he is coming down with something, but the difference in his personality was amazing. He was transformed from a quick-witted lively child, to a “slow” child. His nanny was shocked because he had never seen him like this. I have seen him like this. This is the way he was before we went grain free and sugar free.

The nanny asked whether it was going to trigger the hunger. I said that I didn’t know, but let’s get protein into him fast. We went into the kitchen and he immediately started crying for the dates (the most sugary thing we have in the house). While he likes dates, he hasn’t really noticed or asked for the dates before.

And, of course, makes me wonder if this is why there are so many problems with PWS and the holidays…

Snacks

So, as near as I can tell, a snack should be protein and fat and maybe a little bit of high fiber carbs. Hmmm… Tough enough if you are an adult, even tougher if you are a little kid living in a Goldfish society. So, I am going to start off a list. Can others add to it, and or tell me why some of these are bad ideas? BTW, my little boy won't eat meat. I would think that a bite or two of chicken or turkey would be a good snack for most kids.

Good snacks for our kids: Hard boiled eggs Celery with almond butter Handful of walnuts Handful of almonds Avocado Homemade trail mix made with various nuts and a sprinkling of dried coconut and small amounts of dried fruit Pemmican

Special diets

Some parents have luck with casein-free diets and gluten-free diets. These are described in detail on Healing Thresholds.