PWS Awareness Month-Day 16

\ey Everyone,

Now that you have learned a little bit about EoE, we will talk today about Kemett’s diet and nutrition.  There have been no studies done to know exactly what diet is best for kids with PWS.  We follow our doctor and nutritionist recommendations.

Food is everywhere in our society- at school, holidays, commercials, books, toys, everything.  You don’t realize it until you are trying to stay away from it.  We are grateful for the people who have been inclusive of Kemett (making sure their meals are completely Kemett friendly or not having cake for a birthday celebration).  We know as he gets older, this may be harder and harder to do.  We also want Kemett to be able to be independent, which means having him being in food situations that he cannot partake in. Kemett is now 3 1/2 and has learned about foods he cannot have from friends or at school.  We talk to him about how he has a special belly and cannot have certain things like cake, cookies or pizza.  Also, as Mabel starts to eat things he is allergic to like peanut butter, we talk to him about why she gets to have that food and not him.

He is very aware and is understanding it.  I have heard him tell people “I cannot have a cookie because I have a special belly”.  Or he has asked me if Mabel can eat pizza, which I have replied no she’s a baby.  I explain that pizza is not good for anyone, and if we do eat it, it is in moderation.  I asked him if that made him sad that he cannot have pizza, and he said no that he still would like his sister to be able to eat things he cannot eat.  He is smart and so sweet!  He doesn’t really notice when other’s are eating something different from him.  He has asked for Kemett version of things before (which is super hard with allergies).

Diet is HUGE in Prader-Willi Syndrome.  Doctors have found that kids on low carb, high fat and protein diets, do better than kids on low-calorie diets.  Our kids metabolize their food at 60% of how we metabolize food.   They don’t process carbs in the same way we process carbs.  Because of all of this, people with PWS are on a very strict diet and can never eat certain foods like wheat, grains, sugar and high starch and GI fruits and veggies.  I thought this was hard, and it is, but looking at all the families with no food allergies, their diets look amazing and so easy!  (It is still hard to restrict food for any child).  Allergies complicated our lives in a way I thought we’d never figure out or grow from.  But somehow, as with anything, we did figure it out.  Kemett is doing great on his diet.

I also do not count calories yet, but every once and a while I input his day into myfitnesspal to see the ratios of carbs/protein/fat.  I also have a scale to measure out protein to make sure he is getting enough.  Of course, he is a toddler and there are days he eats all his meals, and days he won’t eat anything.  So even if I try to give him all the protein he needs in a day, he may not end up consuming it.

We still eat on a schedule, as much as we possibly can, which is typically every 2 1/2-4 hours.  We have rules in our house around food, and that will be in tomorrow’s post.  And I meal plan as much as I can.  I do spend a lot of time, especially if we are traveling, thinking about every meal Kemett will eat and what we need to bring with us.  It is very rare that Kemett eats food that we did not bring.  Not only am I scared of a hidden allergen, but also of cross contamination.  We are so careful at home to make sure we clean up after every meal and don’t have things he is allergic to close to our prep area for his food.

What Kemett can’t eat:

    • Processed foods- like goldfish,
    • Sugar, sweets, desserts, etc
    • Candy
    • Juice
    • Rice
    • Pasta
    • Bread
    • Potatoes
    • Bananas and other tropical fruit
    • And of course what he is allergic to: Soy, dairy, eggs, wheat, peanuts and tree nuts

    What can Kemett eat?

    I’m sure all of you are wondering, what can Kemett eat then?  Well here is a sample day of meals Kemett eats.  And I think after you look at it, you will realize it isn’t that revolutionary.  He is eating a whole food diet, nothing processed.  It’s how we should all eat.  Andrew and I have also worked hard to make sure Kemett isn’t eating these things alone, and we feel great because of it!

    Breakfast

    • Organic Steel Cut Oats, 1 tbsp coconut oil, 1 tbsp sunbutter, 10 berries
    • Quinoa or Buckwheat with same items added
    • Coconut Yogurt, 1 tbsp sunbutter, berries
    • Coconut Yogurt, Applegate breakfast sausage (only one type has no sugar added), and berries
    • Milk- Hemp Milk or Ripple Milk

    Snacks

    • Coconut Yogurt, Berries, Seeds (sesame, pumpkin or sunflower).
    • Mandarin Orange with sprouted pumpkin seeds or sunflower seeds
    • Raw petite carrots and Grandma’s hummus
    • Apple and sunbutter
    • Lamb Epic Bar

    Lunch

    • Applegate Lunch meat- organic turkey, 1/2 an avocado, olives or berries
    • Turkey Wraps- coconut wraps (made with coconut meat and water), turkey and avocado rolled up.
    • Chicken Sausage, organic, peas, and avocado
    • Leftovers from the night before

    Dinner (This varies of course! So here are just some samples of what we eat).

    • Baked Salmon, asparagus
    • Zoodles, lamb, natural spaghetti sauce with no added sugar
    • White beans/red beans, quinoa and natural sausage (I’m so happy that we have a Cajun dish he can eat, and one that we eat weekly.  If you didn’t know, my family is from Louisana).
    • Taco Salad- ground turkey, homemade black beans, spinach, and whatever toppings you like.
    • Baked chicken and roasted veggies

Bedtime Snack

  • Smoothie- Hemp Milk, sunbutter, berries
  • Berries and sunbutter

Special Occasions

  • For birthdays we do berries with whipped coconut cream (if we have any).  It is one of my favorite treats and Kemett’s as well!  For us, yes he gets berries in breakfast and in smoothies, but it is rare he has fruit with lunch or dinner.  It is considered a treat, plus we have to watch how much sugar he gets.
  • Final Thoughts

    I hope this helped you get some insight into Kemett’s diet.  If you have a question if something is appropriate or not for a meal, please ask!  We don’t bite, and would rather you be inclusive of Kemett than us feeling left out.   Believe me, if we are invited to your house, my first thought will be what is the food situation?  Food is on my mind all of the time and how to keep Kemett safe.

    Tomorrow we will talk about rules we have at our house, and things you can do if you are having us over, having a playdate, etc.  We want everyone to be comfortable, including us, in situations that involve food.

Thank you to everyone for your support and love!  It means so much to us!  Please ask questions!  Especially around this subject!

Love,

The Demands

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