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More protein, no sugar, low carb and lots of healthy fats? This type of diet has become a way of life, some say survival, for kids with Prader Willi Syndrome. The times are changing when it comes to what more and more parents are feeding their kids. Many parents are reporting remarkable results with a very low carbohydrate, moderate protein, and higher fat type of a diet. It is sometimes termed as the modified ketogenic diet. Typical ketogenic diets are basically 80% fat and used to control seizures not responsive to medications. These diets must be medically supervised, with precise calculations and measurements. The modified version of the ketogenic diet, (MAD) is more forgiving, but still typically is very low or void of many grains, getting the majority of carbohydrate sources from vegetables and some fruit. MAD tend to contain about 20-30 grams carbohydrate which is equivalent of 1 slice of bread and 1-2 fruit. The diet consists mainly of protein, and lots of fat. They still need to be supervised to ensure the right amount of nutrients are provided for optimal growth and development. With the MAD diet, I have heard numerous stories how kids are more focused, calmer, have less behaviours and stop food seeking. Incredibly some say they actually feel full after meals.

Are these parents MAD? Far from mad. They are the new parent warriors against the war of PWS symptoms which can cripple their children’s ability to live more normal lives. Some parents consider this diet, in addition to numerous supplements, to be responsible in helping stave off uncontrollable hunger as well as negative behaviours. Without the backing of scientific evidence, parents are joining together in their own movement to support one another in enabling others to transition to the same. Social media chat rooms, conferences, and parent networking have helped parents to join together and spread the word.

But caution is warranted when there is not the scientific evidence to back this diet up. Are there risks for following this diet? Yes, especially if not properly monitored. These risks include:

  • Hypoglycemia

  • Constipation

  • Bone changes – risk of lower bone density

  • Somewhat high cholesterol – but transient stabilization

  • Kidney stones – especially if on Topamax

  • Acidosis – dangerous state of excess high ketones – acid state of body

The bottom line is BE CAREFUL. Harness the assistance of a registered dietitian to help you design an optimal diet for your child. It can be extremely difficult to implement, especially if your child is older and set in their patterns of eating. But of course, nothing is impossible with perseverance and persistence.

The essence of this diet is that giving a diet that is very low in carbohydrates, forces the body to use fat as a source of energy. When fat is broken down in the body and used for fuel, this process produces ketones – a state called KETOSIS is formed when the blood levels of ketone reach a certain level. Ketosis tends to curb appetite and may be part of the reason why the diet is claimed by parents to be successful at helping. It is also speculated that neurotransmitters may be altered which play a role in behaviour and neurological disorders.

However the truth is the scientific evidence is still not available to prove that this is a safe and effective method of helping control high appetite. Studies are currently being organized and hopefully can be launched very soon to answer these vital questions. There has been some preliminary evidence from Dr. Jennifer Miller’s study in the Journal of Human Nutrition in 2013 entitled “A reduced-energy intake, well-balanced diet improves weight control in children with Prader-Willi syndrome”. Dr. Miller studied the effect of a well-balanced, energy restricted diet on body composition and weight of young children with PWS. The dietary composition was 30% fat, 25% protein and 45% carbohydrate and 20 grams of fibre. Dr. Miller found that these kids had less body fat, and had better weight management than the children who followed the same calorie intake but higher ratio of carbohydrate to fat and protein. This may be the safest way to go until we can more evidence is available that prove that a lower carbohydrate diet is safe and effective for children and adults with PWS. Our traditional Red Yellow Green Diet can be planned in accordance to meet the criteria of a diet which is 45% carbohydrate, 30% fat and 25% protein.

Here is a sample meal plan for 1000 calories which is lower in carbohydrate, and higher in fat and protein.

Breakfast: ½ cup steel cut oatmeal, 5 almonds, ½ cup berries, and ½ cup almond milk

Morning Snack: ½ small apple, 100 grams of greek yogurt with cinammon

Lunch: 1 ounce of roast turkey, 2 tbsp hummous, 1 small whole grain tortilla, 1 tbsp avocado, 1 cup veggies, 2 kiwi

Snack: 2 tbsp pistachios, ½ cup orange slices, ¼ cup shreddies or 2 whole grain crackers

DINNER: 3 oz chicken, 1 cup grilled vegetables such as zucchini, onions peppers asparagus, 1/3 c. quinoa, ½ cup strawberries, ½ cup unsweetened almond milk or greek yogurt

Always remember that extra non-starchy vegetables can be used to fill up a plate to give the impression of lots of food on the plates. I’ve seen this method to be used many times, and unless your kid finds veggies yukky, then it helps to satisfy appetites. A great rule of thumb is to divide the plate with 2/3 filled with vegetables, 1/4 with protein including legumes, and fish more often, 1/8 th with high fibre healthy grains/carbs such as brown rice, quinoa, buckwheat, or sweet potato and a serving of healthy fat such as olive oil, nuts, seeds, or avocado.

I would love to hear your feedback as well as topics you would like me to discuss in future posts!

Karen Balko, RD

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