“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.”
As the new parent of a special needs child there are many things that you don’t feel like you have control over: how often your child gets sick, how often your child goes to the hospital, how many doctors they see, how they need to be cared for, if they have a feeding tube, who comes to your house and how often, what they eat…. Then over time, you go from timidly sticking your toe in the shallow end of the proverbial pool that holds all of the things that your child needs to successfully grow, to giving advice to other parents about the proper form required to dive in the deep end. Life and experience will build your confidence in your ability to be a member of the team and make decisions for your child… and open doors of choice for you that you didn’t know were there, or were afraid to open. You will have more control than you know, because no one will know your child like you do.
The last door that I opened, after I conquered my fear, was feeding Karsten homemade food. Are you thinking… really? I know. Eating…such an ordinary act. But, the prospect of being solely in charge of Karsten’s nutrition intimidated me. Such a simple thing but with him it felt “medical”, instead of a natural parental task. 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 shows up at your door every month that the dietician prescribed for them. Food delivered in little cans or cartons 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 I could marry the invention and science of the feeding tubes that keep our kids alive…with my FIRM belief that God has supplied us with an amazing ability to heal…
What type of healing?
Karsten hasn’t started to walk because I feed him a whole food diet.
He hasn’t regained his hearing because he now eats fresh fruit and vegetables.
But, his body does recover from sickness more quickly. His recovery time is more like a “normal” child’s. He gets sick less often. And his congestion is unbelievably improved.
I am not suggesting that this path is for everyone. It takes commitment and time. Sometimes more time than I would like to devote. But in those times, I remind myself why I do it.
It takes much less commitment than it did at first, because now I know what I’m doing. There was a definite learning curve! But, for those people interested I want to take the fear out of it because it can be done…
Having said that…on to the fun stuff…how to get started…and what I feed Karsten…
First Things First…
Talk to your child’s doctors. Technically you are doing something that is beneficial but you need to have a basic knowledge of nutrition, calories, and the bodies requirements to give your child a balanced diet and feed them in a safe way. Also, if you are reading this because your child or loved one has a feeding tube because of some other medical needs, those needs can affect what your child needs to eat. For instance, some people with cerebral palsy need more protein because of the energy it takes to move their bodies.
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 other specialists that your pediatrician is on board. They may want to have your child’s weight checked regularly to make sure that they are gaining.
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 so there is a list of foods that he has to avoid…second, some kids with cerebral palsy, Karsten being one, 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 try to keep him gaining weight normally. 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 ratio of carbohydrate, protein, and fat. Now what?
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. The CDC also has a lot of nutrition information on their website. They give pediatric RDA’s and those come in very handy to make sure that your child is getting enough of what they need.
Once you have your list of ingredients you’d like to try and you’re ready…be prepared for some trial and error…and some throwing away of formula… before you come up with recipes that work for you, your babies stomach, and the ALMIGHTY feeding pump (if you use one) that can send your beautiful formula down the drain if it is too thick. But once you find those holy grail recipes…it’s priceless…it makes you proud…and it’s easy!
Third Things Third…
Get a good blender, a good strainer, gather your ingredients, and start testing! During this time you’ll be looking for signs of food intolerance…irritability, arching, gas, vomiting, etc. My best advice for this time is take it slow, monitor for food intolerances, and keep it simple. If this is their first time trying food other than the formula that they are used to, think of their stomach as the stomach of an infant. Too many things mixed together can be a digestive disaster. Introduce simple recipes, slowly.
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 high fat moderate carbohydrate diet… and it works beautifully for him. The change in his congestion has been amazing!
I use only whole foods. Mainly organic. Loads of fruit and vegetables. Free range/organic eggs and meat. Grain free, except for quinoa. Grass fed dairy, but no milk or cheese.
What follows does not apply to infants. Karsten was almost 2 when he got his feeding tube and had already started solid foods.
The journey to freedom from the boxed formula…
Let me start by saying that it has literally 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 try to add as much detail as I can into my posts about tube feeding so that you can avoid some of the problems that I encountered.
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. And, she like me decided to mirror the formula ingredients and come up with a whole food recipe. So, I told myself I can do it too! I can pack enough healthy calories into an amount that Karsten can handle. That will go through his pump. 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 took ideas that I liked from several places Arnold Ehret’s The Mucusless Diet Healing System, raw foodism, veganism, Dr. Joel Fuhrman’s Eat to Live, Dr. Perlmutter’s Grain Brain, Dr. Peter Attia… I envisioned what I thought was the “perfect” diet for him. I adjusted as much as I could to get as close to my idea of the “perfect” diet as I could and it all came together and it was a beautiful thing!
I took out anything that was mucus forming from his formula…eggs, goat’s milk, everything. We followed a vegan diet of very simple recipes, for about 2 years. With the digestive issues that he had at the time digestibility was of the utmost importance. Most of my recipes at that time had no more than 5 ingredients.
I noticed great healing in his gut, so many benefits! But, it wasn’t enough. First, I had trouble keeping weight on Karsten. Second, as my study deepened I felt like I could do more, better. So, I slowly added ingredients back into his recipes that I knew were beneficial and I wanted him to consume regularly. I added things one at a time and spaced them at least a week apart. If something didn’t agree with him I would remove it and try it again months later.
Then it was just a matter of finding the right combination of foods so that it met my criteria:
- simple recipes
- highly nutritious
- tasty ( I know that he doesn’t taste them but for some strange reason, this is important to me)
- able to sustain good weight gain
I trialed formulas until I came up with my current system! And one day I noticed it had become easy. It made sense to me. It allowed me to easily vary his diet and it felt right….
And…..voila! We were blending like crazy and haven’t looked back.
Check back for tube feeding recipes and how-to’s!