When my son was born, he couldn’t even feed himself. Within one week he was diagnosed with Prader-Willi Syndrome (PWS), and our special needs journey had begun. My son left the NICU with a naso-gastro tube and a feeding machine. You can read more about PWS here.
To say that our life was turned upside down was an understatement.
I had a degree in education and 14 years of classroom experience. Coming home with a feeding machine and oxygen terrified me. I won’t lie. The only experience I had with the medical profession was that my father had been a medic in the Army. Obviously, that did little to prepare me.
So, through my own research and prayer, I found a solution to getting my son the best nutrition he could have. I share this with you based on the knowledge and experience I gained on our food journey. My son is now healthy, heavy-set, but mostly due to the fact that he argues with me over food (imagine!). However, he is rarely ill, so I feel that is our success story right there!
The PWS Diet Idea.
If you live and breathe in the PWS community, you already know that there used to be the myth that we should feed our children diet food. While it sounds great to buy into that easy solution, I never did. First of all, aspartame is probably the most unhealthy “food” on the planet, and pickles are not a good source of nutriton. Unfortunately, this diet idea was taught to us as parents by the medical and nutrition community.
My first thought was, Are you kidding me? I wouldn’t eat that stuff. Why would I feed my son that way?
Now, parents are wiser, but the diet food idea still circulates in our PWS community, and I am here to say that well, it is the wrong idea. Poor nutrition does not bring anyone good health. Our kids struggle enough with the effects of PWS on their bodies and the last thing they need is diet food.
The PWS Body 101
This may or may not occur to you, but PWS people metabolize their food differently that the average person. If they eat too many carbohydrates, they will both, gain weight easier, and develop hyperphasia, or an extreme drive to consume food. Most of us have learned that giving our children carbohydrates that aren’t really healthy for anyone, drives food-seeking through the roof.
But, we all need carbs to live and survive. We tried the ketogenic diet as well, but I learned that giving my son low carb with complex carbohydrates does not drive up the hyperphasia. So, we got back on the grains, but I still stick with whole wheat bread (I really do make my own), pastas and brown rice on occasion.
When my son goes through a shift in his development, his diet has to change too. When our children are little, their bodies cannot digest all that they need to eat for good nutrition. Feeding them nutrient-dense food and giving them supplements keeps them healthy. As they grow, they will develop some degree of hyperphasia, which will change over the years.
My son started hyperphasia at about age 3 1/2. We knew because he could not walk, but somehow crawled to the refrigerator, opened it, and then pulled out a bag of cheese and eggs. He took them to his toddler table to have a nice feast. Only, we caught him with a few broken eggs and shoving cheese into his mouth.
Yet, when my son began to hit puberty, he put on weight at a rapid speed. I had to change his diet, but I also had to get him back on growth hormone, which he didn’t need for about 5 years. We are still chasing weight-gain, but my son is exceptionally tall and large for PWS.
The battle began that day to keep food out of his reach. PWS will take over sometimes, especially in the area of food. Diet may help, but sticking to a healthy nutrient-dense diet while you keep food locked up, works well.
Supplements and nutrition
Nutrition, nutrition, nutrition. Again, I am not talking about diet food. Our bodies run on the food we eat.
If we feed our bodies well, they will run well, even we have PWS.
I stand firm against the idea that my son should just eat controlled portions, and I bend toward providing him with nutrition dense foods. We cannot always purchase organics, but I try to keep our produce and grains organic. I highlight fairly equal portions of veggies and carbs along with his meat. I cannot afford organic meat, but purchase good quality meat in bulk through Zaycon Foods.
I give him a coq10 supplement, and used this liquid supplement when he was younger, which also has carnitine to help facilitate muscle building. Over the years he has taken vitamin D, C, B, magnesium and calcium. I have even given him some supplements like vitamin B12, omega fatty acids and the cuddle hormone, oxytocin.
A sample healthy meal plan for PWS
When my son was able to eat table foods, the PWSA gave us this meal plan idea that started me on my rebellion routine against diet food. I know they had good intentions, but truly, diet food isn’t healthy for anyone.
For a time, my son struggled with asthma, allergies, reflux and even pneumonia. What I learned was that he was digesting properly, and so we ate gluten-free and dairy-free for a season. It helped him digest better, and even helped me get him off his 9 medications. So, there is definitely something to the diet issue at different stages of life.
Later on, I focused on good old-fashioned homemade yogurt and digestive enzymes, which allowed us to get back on wheat and dairy. So, as I said, your child’s diet may indeed change as they grow.
One meal plan
Since my also has slow gastric emptying, I start off with larger meals in the morning, and taper off the food at night, ending with a healthy low-carb snack. I have found that my son really does not need or want to eat a lot at night before bed. This plan is just an idea to help you decide what you need to do for your own child. The plan is true and kept my son off growth hormone for 5 years.
My son’s diet is different now that he is older, but this is what I used when he was small. Particularly when the kids are small, don’t be afraid to use good quality fats, such as coconut oil, organic or grass-fed butter, or even pure animal fat for cooking! They need fats for brain development. I found my son complained less about other people’s food if he got what his body needed, versus diet food to keep him skinny.
A smoothie made with 2-3 different kinds of fruits or veggie, and milk (doesn’t have to be dairy, but add in extra protein from a powder or in the breakfast). I mix the shake with supplements in a blender so he cannot taste them. Then I scrambled eggs and vegetables mostly with fewer carbs. I have even given smaller portions of low carb leftovers from lunches.
This snack is barely a snack, but I gave him about 1 tablespoon of nut butter or a few nuts to munch on.
Lunch is our main meal of the day. I serve a meat-based main dish, vegetables, and a grain. I have used whole wheat pasta, potatoes or a slice of homemade whole wheat bread. I made everything from stir-fry to casseroles.
A cup of dried fruit and nut mix, or homemade cookies (Mine are very healthy, trust me!)
Since my son doesn’t really eat a full dinner, I serve him this on a salad plate. It brims with salad or veggies, cheese and nut butter. He came up with the general combination, but you could serve things like avocado or a hard-boiled egg.
That’s it! Since my son’ hyperphasia was so obvious at a young age, I would hand out a few almonds to curb his cravings. Now, of course, he knows, we need the diet and stick pretty close to it.
Have any questions? Please use the contact page, or find me on Facebook!
I am happy to share what I have learned.