“Everyone has a doctor in him or her; we just have to help it in its work. The natural healing force within each one of us is the greatest force in getting well. Our food should be our medicine. Our medicine should be our food.” ~ Hippocrates
As the parent of a special needs child initially there are many things that you don’t feel like you have control over: when your child gets sick, when your child goes to the hospital, how many doctors they see, how they need to be cared for, if they have a feeding tube, what they eat, who comes to your house and how often…the list could go on and on. Then, as you go further on your journey, get your feet wet, you find that as you experience more and more events and obstacles they will start to… first build your confidence in your ability to be a member of the team and make decisions for your child… and second open doors of choice for you that you didn’t know were there or were afraid to open. YOU HAVE MORE CONTROL THAN YOU KNOW AND NO ONE KNOWS YOUR CHILD LIKE YOU DO.
The last door that I opened, after I conquered my fear, was feeding Karsten homemade food. Eating…such an ordinary act to most but actually such a privilege . Such a simple thing. As parents we feed our kids. As a mother it’s part of the pride of raising your child…”I feed them well and they grow”. But, if you have a child that can’t eat by mouth…then what? You do like I did. You give them what you’re told to give them. It comes to your house monthly. Delivered in little cans or bottles with a bunch of supplies. You take the bags, syringes, extension sets and milk and do as you were taught. Which, don’t get me wrong, is a very necessary and functional part of your child’s life. It is the reason that my son is alive…..
I could never stop thinking…
What if…there was a better way? What if we could marry the invention and science of the amazing physicians and scientists that created ng-tubes, g-tubes, j-tubes, nissen procedures, mic-key buttons, and all of the supplies that keep our kids alive…with my FIRM belief that God has supplied us with an amazing ability to heal and with perfect tools to help that process along…FOOD. In the right amounts and the right combinations food can heal our bodies.
What type of healing?
Am I saying that Karsten is walking because I started feeding him a natural diet?
Can Karsten hear again because he now eats raw fruits and vegetables?
Does Karsten’s body recover from sickness more quickly?
Absolutely! His recovery time is like a “normal” child’s.
Does he get sick less often?
Has the insurmountable problem of Karsten’s airway being constantly full of mucus almost completely cleared up?
Absolutely! Before, Karsten had to be suctioned daily. Each and every day. Now his suction sits waiting to be used and we only occasionally need to use it during times that he’s sick.
I am not suggesting that this path is for everyone. It takes commitment. After I explain it you’ll see that it takes less commitment than you would think. But, for those people interested I want to take the fear out of it because it can be done…and it can be beneficial for your child.
Having said that…on to the fun stuff…how to get started…and what I feed Karsten…
First Things First
I am a team player and I believe in working as a team for Karsten. I would never make any decision for him without research and conversations with his doctors. We are an orchestra composing a symphony for Karsten. So that is the first part of the three steps to get started. Talk to your child’s doctors… technically you are doing something that is beneficial but you need to know certain things to give your child a balanced diet and feed them in a safe way. I consulted with Karsten’s pediatrician, his gastroenterologist, and a dietician before I made Karsten’s food. The pediatrician will see you most often. So… if you get their ok you can tell the specialists that your pediatrician is on board and has agreed to monitor your child. They’ll want to have your child’s weight checked to make sure that they are gaining. The GI doctor is the mathematician. They know how many calories, in how much volume, how much volume is too much, and many other important things so that what you’re doing is safe. safe. safe. The dietician is the one that will tell you what vitamins, minerals, proteins and fats you need to feed your child to make it as well rounded a formula as possible.
There are ALWAYS individualities that you have to account for in your own child’s food.
For instance, Karsten has two…first, he is G6PD deficient (we’ll talk about that another time) so there is a list of food that he has to avoid…second, kids with cerebral palsy (especially Karsten) burn calories at an enormous rate when they move their bodies. So, Karsten’s formula is made for him, made with only food that he should have. And, it is high in calories to keep him from losing weight. But that is also the beauty of taking the reins! You are tailor making something perfectly suited for your child!
Second Things Second
You’ve talked to all of the doctors. You have your list of vitamins, minerals, ratio of fat and protein. Now what?
This is where it starts to get fun!!! You can hand choose what you give to your child. Google is your friend! Type in vitamin E top foods and you’ll find lists. Do the same with the other parts and you’ll find things that spark your interest. Things that you like. Things that you think that they’ll like. These things will be the base of your formulas. Get a list of categories and foods going because as you slowly introduce foods you’ll eventually want to add in different foods for variety and if you list foods by category of their main beneficial ingredients then it is easy to swap one for another.
I highly recommend The Homemade Blended Formula Handbook
it is priceless for people embarking on this adventure. It is THE reference for homemade blended formulas. It was written by dieticians and also has parent and physician contributions. AMAZING.
Once you have your list and you’re ready to try…there will be some trial and error…and some throwing away of formula… before you come up with something that works for you and more importantly your babies tummy. But once you find that holy grail…it’s priceless!…and easy!
Third Things Third
Get a good blender and gather your ingredients, your references, lists, recipes, and start testing! During this time you’ll be looking for signs of food intolerance…irritability, arching, gas, or vomiting, for example. There is some debate about whether checking stomach residuals is an accurate indicator of feeding intolerance so follow doc’s orders on that. But, checking stomach residuals is an invaluable tool, if your kiddo has a highly sensitive stomach like Karsten’s, to make sure the last feeding has emptied completely before you introduce another food.
There are so many different schools of thought on diets that I won’t be biased in this section about any specific thing to try. Karsten and I have found our path and I love it! Karsten is on a vegan diet and it works for us…but there are people that put meat and eggs and dairy in their formulas. Karsten is 100% vegan and mostly raw and it works for him. The change in his breathing has been miraculous! Sorry I think that might have been a little biased
Now onto what I feed Karsten…
Let me start by saying that it has been a journey. I didn’t put together a great mixture and suddenly we were blending away with no problem. It took trial and error to get to the point that we are at now. But, now we are a well-oiled machine. I will try to add as much detail as I can so that you can avoid some of the problems that I had.
Karsten’s formula started out as a formula based on a recipe that I loved from an amazing mother
who inspired me to say “if she can do it I can do it”. Her daughter was on the same high calorie formula as Karsten before she started blending. So, I told myself I can do it too! I can pack enough healthy calories into an amount that Karsten can handle. I’ve got this.
Then, I hit my first wall! Karsten is not her daughter. As soon as I put that goat’s milk inside of him, as close to human’s milk as goat’s milk is supposed to be, his phlegm factory kicked into high gear! It actually made it worse.
So then my study deepened. It got a little more….off the beaten path. I came across Arnold Ehret’s The Mucusless Diet Healing System
, raw foodism, fruitarianism, food combining and it all came together and it was a beautiful thing!
First things first I took out anything that was mucus forming from his formula…eggs, goat’s milk, everything. I replaced them with non-mucus forming equivalents.
Then I found out about food combining…and I separated the formula into two different formulas to increase digestibility. One vegetable/grain based and one fruit based.
And…..voila! Almost there with only a couple more lessons to learn that I’ll tell you about after the recipes…
Karsten’s Fruit Formula
This formula is the one that Karsten digests most easily. By this time you’ve researched (nothing beats your own knowledge) and checked with your child’s team so you know which if any fruits to avoid. For example, Karsten is G6PD deficient so we avoid high doses of vitamin C which means (refer to the food combining chart) he doesn’t eat many fruit from the acid category because they are usually very high in vitamin C…we mostly stick to Sub-Acid and sweet fruit.
- 1 banana (a ripe easily digestible banana is a banana with spots)
- 3 regular apples or 6 small apples (cores removed)
- 5 dried dates (seeds removed) or 5 dried figs (stems removed)
- 2 c. cultured coconut milk (vanilla or strawberry flavor because it’s higher calorie)
- 6 Tbsp. organic raw honey (not for children under 1 year of age)
Place all of the ingredients into your blender. Blend for 30-60 seconds. Place a strainer over a large mixing bowl. Pour into strainer. Using a spoon make circular motions around the strainer to push liquid through. Separate into individual feedings and refrigerate.
Straining is one of the steps that I added… after much thought (I try to keep his food as close to its natural form as possible and straining pushes it through metal and removes some fiber) BUT it is very necessary even with a Vita Mix if you want to be successful. Dealing with machine clogs every five minutes will end your formula making quickly! I suffered and lost sleep a long time before I started straining!
This recipe can be easily changed day to day just by changing out one fruit for another fruit, always paying attention to calories and volume (I’ll explain later). If you want to follow fruit combining remember that the circles must touch to be a good combination. No mixing acidic and sweet fruits. Eat melons alone or leave them alone.
| Organic Raw Honey is solid. Run it under warm water to soften it for measuring.
Karsten’s Veggie/Grain Formula
This formula is the one that I have had to tweak. The fat content is higher because it is vegetable based and vegetables are lower in calories. So to keep the volume something that Karsten can handle I must increase the fat. Though it is healthy fat Karsten’s sensitive stomach has had some trouble. I will list the original formula because it should be fine for most kids and (in bold parentheses I will list the changes that I’ve made for Karsten).
- 1/2 c. quinoa
- 1/2 c. brown rice
- 4 Tbsp. flax oil
- 1 in. piece of ginger
- 1 avocado
- 6 oz. hemp or oat milk
- 1 c. rice milk
- 1 Tbsp. Udo’s 3-6-9 oil
- 1/2 c. aloe juice
- 1 c. any type of raw greens ~ Karsten’s stomach prefers collard greens
- (Now, I juice the greens and the ginger and then juice cucumber to make 4 oz. of juice and then add water to make 8oz. of liquid and use it in place of the whole greens and whole ginger)
- (Now, I switch off between grains and avocado. I don’t put them together in the same formula anymore. I double the amount of whichever I am using and the next time I switch to the other)
Place all of the ingredients into the blender. Blend for 60 seconds. Place a strainer over a large mixing bowl. Pour into strainer. Using a spoon make circular motions around the strainer to push liquid through. Separate into individual feedings and refrigerate.
I change this recipe from day to day by changing the grains that I use alternating between quinoa, brown rice, and forbidden rice (similar to wild rice). I also change the greens from batch to batch. The calorie count does not vary greatly because most grains and greens have close calorie counts.
What’s with the book with the crazy calculations?
This book is how I make switching my formula easy. For example, if I want to change a fruit, I just compare the calorie count that the fruit I want to substitute out is adding to the formula…and then I know how much of the new fruit I have to use to make up for it.
Also, it is how I keep track of a very important thing…
Calories : Volume
You want the formula that you make to mirror as closely as possible the commercial formula that your child was on because your doctor chose that particular formula and feeding dose and rate for a reason. So, if your formula closely mirrors the calories and volume those important feeding doses and rates won’t have to be changed. Also and most importantly, you can be sure that your child is getting the right amount of calories. For example, Karsten was on Boost Kid Essentials 1.5. This is a high calorie formula that Karsten used because he could not handle the volume of a lower calorie formula that he needed to continue to gain weight.
What does that mean?
For Karsten, there were 1.5 calories for every mL of formula. If your child is on a 1 calorie formula, there is 1 calorie in every mL of food.
Why is that important?
This is the quick check for the right calorie count in your homemade blended formulas.
If your child is on a 1 calorie formula – The calorie count should at least equal the amount of food that your recipe makes. If it is more, not a problem, you can always give less volume.
If your child is on a 1.5 calorie formula – The calorie count should be at least 1.5 times the food that your recipe makes.
So know which type of commercial formula that your child is getting. Use your blenders graduations. After you’ve made your formula find the mL graduations on your blender. Get your sheet where you calculated the calories in your formula and check…
If your child is on a 1 cal…
Are the calories at least as much as the amount of food you just made?
If your child is on a 1.5 cal…
Multiply the amount of food that you just made by 1.5…does it at least equal the calories that you calculated?
If not, pack in a few more calorie dense goodies. Calories are extremely important!
If yes, congratulations! You’ve just made your first formula!