The Basics: Part V

Hello! In this entry I'm going to educate you on FAT. The good, the bad & the ugly. Good news is that fat is an essential part of our daily diet & should most definitely be consumed in moderation. For our Prader-Willi kids we need to make sure the fats we include in the balanced percentage of their daily intake consists of only qualifying fats. Fat carries vitamins throughout the body & also supplies Essential Fatty Acids. Fat is essential in eye & brain development and for cardiovascular health. It's also necessary for balancing hormones.

Here we go... Fat brings vitamins A, D, E & K to all parts of the body. It is advised not to take mega-doses of these vitamins as they can be toxic to your body in large quantities. This is because the body naturally stores these vitamins in fat tissue & your liver, hence being called fat-soluble vitamins. Water-soluble vitamins include vitamins B & C, which need to be replenished on a regular basis. 

Vitamin A plays a major role in eyesight, bone growth, tooth development, reproduction, cell division & regulation of the immune system.
Vitamin D is responsible for the body's use of calcium by increasing the amount absorbed from the small intestine, helping to form and maintain bones.Vitamin D also plays an essential role in the body's immune system.
Vitamin E** acts as an antioxidant. It also shields vitamins A and C, red blood cells, and essential fatty acids from being destroyed.
Vitamin K is essential for proper blood clotting & bone health. This vitamin is also naturally produced in the intestines & produces proteins for blood, bones, and kidneys. 

Fat also supplies Essential Fatty Acids (EFAs). These are the most important of fats, and play the most important roles.We must ingest EFAs since the body does not produce them on it's own. You know EFAs by their more popular names: Omega 3 & Omega 6.

Seafood contains Omega 3, the type the body prefers, and are linked to lowering the body's level of triglycerides (fat). When the blood is rich with triglycerides there is an increased risk of clots that block the flow of blood to the heart & brain, and an irregular heartbeat.

Seafood's Omega 3, an unsaturated fat, is called DHA (same kind found in mother's breast milk) & EPA. DHA is crucial for the proper development of brain, eyes & heart in children, and has been helpful with attention disorders. EPA is proven to lower inflammation in the body & have positive affects in mental health.

The best source for Omega 3 fats is fatty, cold water fish such as salmon, sardines & tuna. Not only those with Prader-Willi benefit from regular intake of Omega 3. Claire eats her Omega 3 mostly in fish & also takes a supplement each day, which is recommended by her doctor. I add ground flax to things like meatballs & quinoa bites, too!  
For the supplement we use Coromega in the orange flavored packets with vitamin D added. To check this out click here: Omega 3 + D  
Flax has long been considered a good source of Omega 3, but they are from the essential fat ALA (alpha-linolenic acid) and experts say that less than 10% are actually converted to Omega 3.
Update 9/2015 - We have changed Claire's Omega 3 to Nordic Naturals. Because she has been formally diagnosed with Apraxia of speech, we follow a formula that was created after lots of research specifically with children with significant speech delays. This blog follows this formula as well, and has it nicely written here: https://apraxiastory.wordpress.com/top-3-must-dos/fish-oils/brand-and-dosage-information/

Saturated fat is one of the fats we should restrict the most from our diet, the other is Trans fats. There are no dietary guidelines for saturated fat because the body already produces all it needs, but there is no need to totally avoid saturated fat to maintain good health, just limit it. Cheese, milk & meat are some popular forms of saturated fat & also provide nutrients like protein, vitamins & minerals. 
Cheese is a big part of Claire's diet. Right now we rotate cottage cheese, 2% reduced-fat cheese & the part-skim mozzarella, usually in the form of string cheese. We did take her off drinking cow's milk due to the carb content & our own feelings that it isn't a necessary part of her diet, but she eats Greek yogurt all the time. Also, we limit the amount of red meat she consumes and mostly stick to chicken & turkey. We don't seem to have an issue with protein in her diet, it's definitely a challenge with qualifying carbs & fats.
There are highly saturated vegetable fats such as coconut oil, palm & palm kernel oil & cocoa butter and these are considered unhealthy. They are used in packaged goods such as chocolate, cookies, crackers & chips. I know coconut oil is trendy right now, but before you use it on a regular basis please read this:  Coconut Oil Update
I understand that it is REALLY difficult to not purchase pre-packaged foods from the grocery store. After these "basics" entries are done, I promise to give you some easy ways to avoid buying some of the popular packaged items & replace them with homemade items. 

 

Eating less saturated fat doesn't necessarily help your weight, either. In a study in The New England Journal of Medicine, they found that a low-carb diet resulted in faster weight loss & better cholesterol levels than those on a low-fat diet, even though the low-carb group was eating more saturated fat. This may be because eating less carbs causes less insulin to be released, which may reduce fat storage, control hunger, and influence metabolism. (I can't help but think of this being a huge reason that the diet of someone with PWS is a carbohydrate-restricted diet). Also, when you replace saturated fats (bacon) with refined carbs (bagel), your triglycerides can go up and your good cholesterol can go down.

Unsaturated fats - monounsaturated & polyunsaturated - should be the primary dietary fats in a diet. Polyunsaturated fats include Omega 3 & can help reduce blood cholesterol. Monounsaturated fats also help reduce blood cholesterol levels, and are typically high in vitamin E. They also provide nutrients to help develop and maintain your body’s cells.

Sources of polyunsaturated fats include: 

• corn & safflower oils 
• sunflower seeds & sunflower oil 
• flaxseed & flaxseed oil 
• soybeans & soybean oil 
• Fresh fish (Salmon, Herring & Trout)

Sources of monounsaturated fats include: 

• olive, canola & sesame oils 
• avocado 
• almonds, cashews, pistachios 
• peanuts & peanut butter

And here comes that nasty 5-lettered word... TRANS

Trace amounts of trans fats are found naturally in some beef & dairy. Most of them are MAN-MADE fats made when hydrogen GAS reacts with oil. Gross. This is where the name hydrogenated comes from. It converts the oil into a firmer, tastier product & increases it's shelf life.

Trans fats are bad, bad, bad for you. Ditch them! Here's what they will do for you:

• Clog your arteries that feed your heart & brain
• Cause cancer (including breast & colorectal)
• Cause heart disease (reports say this doubles in women)
• Cause heart attack or stroke

Trans fats are found in A LOT of processed foods. Because of it's serious health threat, trans fats were required by the FDA to be listed on (US) food labels starting in 2006. Some food manufacturers have greatly reduced or limited the amount of trans fats used in packaged foods when this rule was enforced. More bad news - any amount at, or under, .5 grams in a serving size is not required to be accounted for on the food label. So if you eat 3 servings of something that has .5 grams of trans fat, 4 times a day, you're really consuming 6 grams of trans fat. YUCK!

Here's a tip to purchase foods without, or with very little, amounts of trans fat. If the nutrition label states 0 Trans Fat, don't stop there. Look at the list of ingredients. Again - you should be reading ALL of your food labels. Look at serving sizes first of all - you'd be surprised at how little some packages consider a serving size. This is what you should do if on that Nutrition Facts label you see the words "hydrogenated" or "partially hydrogenated":  Take a mental note of that food item, put the package back on the shelf quickly, back away from the shelf, grab your kids, your cart, your purse, and all things holy to you & don't ever pick up that package ever again (thanks to the mental note you took first).

Biggest categories containing trans fats:

• Fried foods: chicken, French fries, biscuits, fried fish
• Donuts & muffins
• Crackers
• Cookies
• Cake mix, icing & pie
• Microwave popcorn
• Canned biscuits
• International/instant lattes & coffees

Let's play a game. What is WRONG with this food label of these cookies? 

I guess this might only be a difficult game if you were color blind...

WAIT! There is good news in all this! A study released in February of 2012 from the Centers of Disease Control & Prevention finds that Americans' blood-levels of trans fats have dropped 58% over the past decade - possibly in part of the new labeling law. 

Qualifying fat in a diet of someone with Prader-Willi can prove to be very challenging. Everyone should live by the guidelines on this information on fat. NO TRANS FAT (including no hydrogenated oils), very limited SATURATED fat intake, and regular intake of Omega 3-rich foods. Fat is essential, but we have to be smart about what kinds we consume.

Follow me on Facebook for more updates: Prader-Willi Foodie on Facebook

**Research from decades ago suggested that taking antioxidant supplements, vitamin E in particular, might help prevent heart disease and cancer. However, newer findings indicate that people who take antioxidant and vitamin E supplements are not better protected against heart disease and cancer than non-supplement users. Many studies show a link between regularly eating an antioxidant rich diet full of fruits and vegetables, and a lower risk for heart disease, cancer, and several other diseases. Essentially, recent research indicates that to receive the full benefits of antioxidants and phytonutrients in the diet, one should consume these compounds in the form of fruits and vegetables, not as supplements. (www.ext.colostate.edu/pubs/foodnut/09315.html)

The Basics: Part IV

In this entry on the Prader-Willi Foodie blog, I will be covering proteins, and why they are essential to one's health. To re-cap, we are on a balancing system when it comes to Claire's meals. The total amount each day that she should consume is made up of 40% carbohydrates, 35% fat & 25% protein. I admit that each day is not perfect for multiple reasons. 

As a lot of you know, at this stage in a toddler's life, a lot of food tends to be ejected off their plate. Claire will pick up a fist full of food, look me dead in the eye while she hangs her little hand over the floor, and as soon as I say "no Claire, that's not nice, we don't..." food is thrown onto the floor. And then she does this exaggerated lean over the side of her high chair like, how did that get there? Stinker. I swear if she wasn't so cute...

This picture is hilarious! Those ARE NOT HER TEETH! It was one of those round puffs & it ended up in her mouth like that so perfectly. She had no teeth at this time - as you can see she was still being fed via NG tube.  






We do the best we can do, but no, it's not perfect each day. I try to get each meal & snack balanced so there is no spike in her blood sugar that will cause hunger sooner than a few hours from that particular meal. Getting Claire in the right habits at a young age is going be essential in her ability to make the proper food choices for herself in the future. I don't expect her at age 10 to be able to whip up a cauliflower crust pizza with 3 oz of part-skim mozzarella cheese & 2 tablespoons of sauce. It is my job as her mother to make sure the ratios are what they are. When she goes to get ice cream with her friends is when I need to be comfortable in knowing that she'll get one scoop of frozen yogurt. Plain. And wash it down with a bunch of water. :)

I cannot predict the future, but I want to be able to take away any anxiety there is about food. Food is for energy. Yes, we can & should enjoy our meals, but that's it. Our family has decided that in the next few years, when Claire is able to take part in more physical activities, that we are going to start creating different traditions on those holidays that surround food. Thanksgiving for example, we have decided to volunteer at a soup kitchen or retirement home. This is good for all of us on many different levels. Maybe we'll go paddle boarding in the morning (if I can peel AJ away from football - thank the good Lord for DVR) or go for a long bike ride. Holidays are about family, not gorging yourself to the brink of sickness on an annual meal. (Average Thanksgiving Meal for One Person: 3,000 calories)

Protein: A molecule composed of polymers of amino acids joined together by peptide bongs. A protein has several functions. It may serve as a structural material (keratin/hair), as enzymes , as transporters (hemoglobin), as antibodies, or as regulators of gene expression.
A protein may be classified based on its form and main functions: it can be a globular protein like most enzymes, fibrous protein which are for structural role; and membrane proteins that serve as receptors or channels for a molecule to pass through the cell membrane.

• Each gram of protein equals 4 calories
• There are complete & incomplete proteins (complete proteins contain all the essential amino acids)
• Complete proteins include meat, poultry, fish, dairy, eggs, and soy
• Incomplete proteins include nuts, grains, fruits, and vegetables
• Too much protein in the diet can be harmful to your kidneys & liver
• Proteins are used mostly for energy, metabolism & muscle mass 

Most people in the United States/UK do not have issues with meeting the recommended daily intake of protein. Too much protein, or the wrong kind, in your diet can definitely cause issues. For example, consuming too much meat can cause gout. 

Protein is essential for your body in regards to building and maintaining lean muscle mass, strengthening your immune system, repairing damaged cells and tissues, manufacturing hormones & functions as an energy source.

Research proves that protein is by far the most filling, having a large thermic effect. When your body is digesting food it is naturally burning calories in the process. This is called the Thermic Effect Of Food. Different foods have different thermic effects & protein happens to require the most amount of calories to digest.
By no means do I suggest going over the recommended daily amount that is right for you of your child, but this proves that protein is pretty darn good for you.
More Info on Thermogenesis

As you can see from my example below, Ryan Gosling clearly eats his protein. :)

The Basics: Part III

In The Basics: Part I we went over the glycemic index (GI) & how we should make sure to choose foods that don't cause sudden spikes & drops in blood sugar. In Part II we went over the three different macronutrients: carbs, proteins & fats. Now I'll tell you how each macronutrient affects the glycemic index. Let's start with those pesky carbohydrates. Most of the carbs we eat are made up of starches & in order for all of the starches to be absorbed and enter into our bloodstream, they have to be broken down into glucose (the smallest of the sugar molecules of which starches are composed). Glycemia indicates the rate at which glucose is absorbed (digestability). Carbohydrates are very complex (no pun intended), so I am going to try to outline the important parts & explain why it matters to the GI, and our kids.  

 

This is a picture of Claire's first visit to Manny's Deli in Chicago. 

That is half of my turkey pastrami sandwich, just HALF! She weighed around 6lbs in this picture. Clearly I polished off about 4lbs of sandwich, whoops. 

Those days are long gone!

Food Starch:  Extreme boiling temperatures modify starch structure. When starch is heated, water is absorbed, and the starch granules swell with a sort of solution. When the heating process is prolonged - usually boiling to desired consistency, what happens is something called gelatinization, because the solution formed has a gelatinous, highly viscous consistency.  The greater the degree of gelatinization in starches, the greater its capacity to become glucose and, naturally, the greater its tendency to raise blood sugar levels (GI). 

This does not hold true for ALL vegetables, but mostly for starchy ones such as potatoes, sweet potatoes, yams, plaintains, and carrots. Raw carrots, for example, have a GI of 20. That GI spikes to 50 as soon as they are boiled. My point here is that when eating these items, serve in moderation & try to serve both raw & cooked carrots (not at the same time of course). We were advised to stay completely away from white potatoes, and yams or sweet potatoes should be enjoyed not more than once a month. Personally, I can't stand plantains, so those will be no problem to stay away from. Also, slightly cooking veggies, like steaming them, actually helps the body absorb more of it's nutrients. But to steam them so they lose all structure & are just a wet mess, they have been reduced to kinda useless.  

Recent studies confirm that the body absorbs much more of the beneficial anti-cancer compounds (carotenoids and phytochemicals—especially lutein and lycopene) from cooked vegetables compared with raw. Some vitamins in food are the ones to suffer being that they are reduced by up to 30% once the food is heated. 
Claire loves carrots, and right now she has to eat them somewhat cooked to be able to get her little teeth to break them down. Each time I give them to her, however, I try to not cook them quite as much as the time before. Hopefully she will be able to move onto raw ones in the near future. I am trying to get her to eat more & more raw veggies, and we always eat slightly cooked veggies too.It will always be a combination of the both.
It is very note-worthy to share that it has been found that steaming your veggies, rather than boiling them, causes less gelatinization. My message here is that vegetables (qualifying vegetables) should be enjoyed both steamed, or lightly cooked, and raw to maximize all their health benefits.

Corn has an especially high starch content, meaning that it is quite high on the GI. As you know from reading food labels (and you should be reading food labels), food starch is CORNstarch. It is used as a thickening agent, biding agent, in a lot of bread items & in powdered sugar. Modified food starch, again is cornstarch, is really found in so many prepackaged foods. Popcorn, on the other hand, has a lot of benefits like fiber content & the level of an anti-cancer compound called ferulic acid. 

Another reason cooking from scratch has numerous health benefits!

Fiber contained in starches reduces glucose from being absorbed into the bloodstream, hence preventing blood sugar spikes. Starchy fruit is higher on the GI depending on how ripe it is. This is true for many fruits & vegetables: the longer they sit to ripen, the higher their number on the GI. The skin of most fruit, like an apple, contains a good portion of it's fiber. Peeling an apple does no one any favors in regards to GI & fiber. Fresh fruits & vegetables are necessary for more than one reason!

When starchy foods are ground into finer particles (wheat into flour, oats into cereal, etc) it allows for easier absorption, hence raising it's GI.  Because of the way flour is now milled & super-refined, they have lost fibers, proteins, vitamins, minerals & essential fatty acids, which causes the (unnatural) rise in it's GI. 

To see where your next meal falls on the GI, click here:  Check the GI
Nutritionists advise that anything that falls on the GI at 70 or higher is a HIGH GI, anything 50 or below is is low. 

At one time (for a brief moment) I thought a gluten-free diet would probably work beautifully for Claire. Then I started researching what is actually in gluten-free foods and found a lot of them just replace wheat with rice (big no-no for PWS). This is why I urge everyone to read & understand your food labels. Some gluten-free bread is also low-carb, so there are good choices out there, we just have to look for them!  

COMPLEX vs. SIMPLE CARBOHYDRATES:
Complex carbs are usually the more nutritious of the two, found in fruits and vegetables (apples, berries, spinach, broccoli, beans, zucchini, lentils), whole grains (quinoa, barley, wheat, buckwheat)  & cereals (oats, semolina wheat). These carbs are broken down more slowly, giving the feeling of fullness for longer. 
Simple carbs are the bad ones. They are usually found in sweets (table sugar, honey, milk, pop - or soda again for you southerners, juice, etc). These carbs tend to only be a quick fix for hunger, lasting a very short amount of time. Fruit is really the only simple carb considered to be good for you.

 

There are many ways that carbohydrate starches & sugars are modified. They all affect the body's ability to digest & absorb them, leading to glycemic & insulin reactions. (http://www.montignac.com/en/the-factors-that-modify-glycemic-indexes/)
So, basically, carbohydrates are evil. Kidding! Carbohydrates provide fuel you use as energy for physical activity, brain function and organ function. However, carbs that are not used are stored as fat. 

Eating carbohydrates stimulates the production of serotonin, a brain chemical that impacts mood and appetite. Studies indicate that those with PWS have increased neuronal reward activation in response to food, especially high energy foods, both pre- & post- meal (Holsen et al., 2006, 2009: Miller et al., 2007). We believe that is where the craving for these high-energy (high carbohydrate-containing) foods come into play with those with PWS. Getting into good habits with good carbs will help curb those cravings naturally. 

The Basics: Part II

These posts might be a little more technical than you would like, but I feel that in order to WANT to make the appropriate changes for our children in the area of food, we must understand why. In The Basics: Part I we went over the glycemic index & what it means not just for those with Prader-Willi, but everyone. The glycemic index is one of the baselines for which we want to create our meals/snacks around. Personally, I think everyone should use this when choosing what to eat.

In a paper written in part by our favorite doctor, she concluded after a study of 63 children, that a macronutrient balanced diet had much better outcomes than a energy (calorie) restricted diet alone. The kids (ages 2-10) who used the macronutrient ratio of 45% carbs, 30% fat & 25% protein with 20 grams of fiber per day had on average 20% LESS body fat at the end of the study. WOW!

What is a macronutrient? They are the three groups we are trying to balance: Carbohydrates, Fats & Protein. Carbohydrates are mostly made up of starches & sugars. Fat has several different types including saturated, monounsaturated, polyunsaturated & essential fatty acids. Protein is mostly made up of amino acids (long chains of amino acids). A little fun fact: the first amino acid ever isolated was in asparagus!

The typical weight gain in a child with PWS, which usually precedes an increase in appetite starts between 18 - 36 months. This weight gain has been hypothesized to be a result of decreased overall energy of the child & possibly abnormalities in carbohydrate metabolism. There is a difference in hormones with people who have PWS, including high levels of ghrelin** & low levels of insulin**, which are considered to contribute to the appetite abnormalities.

Back to macronutrients! You have probably all seen the new 'My Plate' which took the place of our popular food pyramid. I like the My Plate idea for kids without PWS, but luckily we have our own special plate & it looks like this:

High Quality Proteins:

• Lean cuts of meat
• Lean ground meat
• Nuts & Seeds
• Nut butters
• Eggs
• Seafood
• Soy products (ie: tofu)

High Quality Carbohydrates:

• Green leafy veggies
• Berries
• Vegetables
• Fruit

High Quality Fats:

• Nuts
• Avocados
• Olives
• Fish 
• Some cheese

 Big No No's for Prader-Willi Syndrome:

• Pasta 
• White Potatos
• Rice

Next time I'll talk about more about these macronutrients & what the different types are within each. Also how the body breaks them down & uses them for energy. The balancing we use for these macronutrients is essential in keeping energy levels steady & being able to use diet for optimal overall performance. Claire is in 4 therapy sessions per week, takes one nap & has a typical bed/awake time. We believe that with Claire's balanced macronutrient diet, only using qualifying foods, and the fact she's on a pretty strict routine, is the reason she is doing so incredibly well. She can do an hour and a half of straight physical therapy and not get sleepy. She also does back to back occupational & speech therapy and is still rearing to go after those are over. 
(UPDATE 1/1/2015: Claire is now 3 & has been in preschool since September. She goes 3 half days at a private preschool & LOVES it. She has since been diagnosed with severe apraxia of speech. She has 5 therapy sessions per week plus one session of hippotherapy. She takes a nap on occasion & is still doing very well in the area of energy.)

We are in a Mom's Group here in southwest Florida & we do play dates at least one to two times per week. She is always able to keep up with the kids her age & a few years older with no problem whatsoever. I know at almost 2 years old we have not begun to deal with a lot of the things that come with Prader-Willi Syndrome in behavior & physical attributes, but that is why we are so adamant about getting in front of potential problems before they surface. It's easier to start with a preventative approach rather than fix a problem. 


**Ghrelin is a hunger-stimulating hormone that is found in the lining of the stomach & in certain cells of the pancreas. For further information about ghrelin, click here: Ghrelin Info 
**Insulin is a hormone produced in certain cells of the pancreas & is responsible for the carbohydrate & fat metabolizing of the body. Insulin causes cells in the liver, skeletal muscles, and fat tissue to absorb glucose from the blood. For further information on insulin, click here:Insulin Info