Promoting Change

I currently have multiple projects underway, and I ask you to consider what you will commit to doing to help. This post is specifically addressed to families with a tube-fed loved one or tube-fed individuals.

Let’s define the problem. The default diet for tube-fed people continues to be enteral formula. While some advances have been made, the medical profession as a whole is continuing to give incorrect information to parents about enteral formula and its potential side effects. It is also not uncommon for hospitals to force parents to feed children enteral formula even though it makes them vomit many times per day to the extent that the child ends up needing additional medical intervention to treat the conditions caused by the formula in the first place.

This is really happening. I hear these stories on an extremely regular basis. I have had to help parents fight doctors and dietitians who were engaging in terribly unethical practices against parents who simply wanted to feed their child what every other child in the world is fed: food.

And I have decided enough is enough. Our children shouldn’t have to suffer the way they have so that a couple of formula companies can laugh their way to the bank with giant bags of money.

I have also learned a lot about the value of proper nutrition through my son’s journey (which you can read about here). The reality is that even parents of orally-fed children are struggling with gaining access to proper nutrition advice as doctors are pushing sugar-laden beverages, such as Pediasure, onto them more and more, describing them as health foods.

So, I am on a two-fold mission.

  1. To help families pursue happier, healthier lifestyles through means that are not coercive, but relaxing and fun.
  2. To change the default recommendation for tube feeding to blenderized diets of nutritious food rather than enteral formula.

To this end, I have four projects going. And you can help.

1. I am writing a series of books families will adore that both make healthy food choices fun and raise awareness about tube feeding and enteral nutrition. 

Information about this project:

My books can be found here.

My fiction books weave strong, positive messages about healthy choices into their magnificent stories. Most relevant to the tube feeding community is my series, The Quest. This is a fantasy series that takes its readers on a spectacular journey to other worlds. In addition to the positive messages about healthy choices, every book in The Quest series includes a key character living with a feeding tube who sends a clear message about blenderized diets.

These books provide experiences every family will benefit from, but will also raise awareness about issues surrounding tube feeding. Some of the families that enjoy these books will join us in our efforts to change the approach to enteral feeding. Because I have provided them with a meaningful experience, they will find meaning in joining us on this journey.

How you can help:

1. Purchase the books, and leave a review on Amazon. Tell your friends about the book. I have found approaching friends directly accomplishes far more than simply sharing a link on a timeline. Directly approach your friends and tell them why these books are important to you and your family.

2. Like and follow my author page here. Comment on my posts and share them. This drastically increases the visibility, not only because of sharing, but posts with lots of comments and engagement trigger Facebook to make the post appear to more people.

3. Sign up for my mailing list. You get a free book! (please leave a review for it on Amazon). Encourage your friends to download the free book and sign up for my newsletter. I also have a free audiobook for families to listen to together that will introduce them to the series. Share this with those you know, and tell them why it is important to you. Again, this can all be found at Crunchy Tubie Mama Books here.

4. For those that are in the Facebook group, Blenderized RN, engage in my posts about these books. This triggers Facebook’s algorithms so more members see the post.

5. There are expenses associated with a project like this. Books must be properly advertised to become successful. I am taking classes about marketing books, and I fully intend to do this effectively. However, advertising costs money. Book covers cost money.

These books are available for an extremely affordable price on Amazon so that they can gain as much exposure as possible. However, this means the financial cost of producing these books must be supplemented during these early stages in which an audience is being built. Eventually, the books will become self-sustaining.

Until then, donations are greatly needed and appreciated. You can send your donation here. This is powered by Paypal and is safe and secure.

5. Reach out to relevant blogs and websites you follow and ask them to consider inviting me to write a guest post or to interview me about Bradley’s story and the way in which his journey with a feeding tube and a blenderized diet inspired the creation of these stories.

I have specific people in mind I have reached out to, but have not gotten replies. Feel free to email me (crunchytubiemama@gmail.com) to learn who as perhaps if we storm their email and social media, they will come to see the value and importance in our message.

This project is of extreme importance as it will build the number of people interested in engaging in the project listed under #4.

 

2. I am starting a podcast.

Information about this project:

I am starting a podcast with the same purpose as my books. This podcast will appeal to a wide audience seeking relaxing, enjoyable ways to lead a healthier lifestyle. Issues relevant to enteral nutrition will often be incorporated into the episodes to raise awareness. I will also be interviewing parents for various episodes to talk about what real food has done for their child.

In addition, I will be creating episodes with short stories for children and families to enjoy.

How you can help:

1. Listen to the podcast, and share it with friends. Like the books, approaching friends directly is far more effective than simply sharing a link on a Facebook timeline and moving on.

2. There are costs associated with this as well. With the current equipment I have, it will be extremely time consuming to create these episodes, and they will not be the high quality they need to be. With some basic equipment, I can create high-quality podcasts efficiently. As the audience for this podcast grows, so will the voice of the blenderized diet community.

Podcasts also require advertising, which is an expense. You can donate toward this project here.

This project is also of extreme importance as it also will build the number of people interested in engaging in the project listed under #4.

3. I am launching a program to help parents get their children’s eating on the right track.

Information about this project:

I have written a nonfiction book helping parents with picky eaters or children with poor eating habits who need help improving their children’s eating habits. This book provides basic information to parents and offers an additional program for those that need more support.

The program is called Modish Mealtimes. It is a 6-week program for parents to journey through together with assigned activities to transform their family’s eating habits. This program is not designed for children with feeding disorders, though some of the information would be applicable. This program is offered at a tremendously reduced rate for blenderized diet families, not specifically for their tubies, but for their other children who may be struggling to eat a wider variety of food.

Learn more about modish mealtimes here and my book, Your Prehistoric Mother and You here.

How you can help:

1. When you see a friend mention frustration with their child’s eating habits, tell them about my book and program.

2. Read my book and leave a review on Amazon. Sign up for the program if you believe it would benefit you. Email me for the reduce price for BD families.

 

4. I am petitioning the World Health Organization.

Information about this project:

This is the big cahooey. No, that’s not a word. But, this is still the big cahooey. The reality is that the recommendations for enteral formula are currently based on marketing schemes, not scientific data. Virtually all scientific data relevant to this subject contradicts the current recommendations for enteral feeding.

Nestle Health Science and Abbott Nutrition have conducted and shared improperly done scientific studies with extremely flawed study designs. They have given only partial information about these studies when speaking to medical professionals, misleading them with inaccurate information.

Nestle Health Science, Nutricia, and Abbott Nutrition are routinely making medical statements about their products that have never even been tested to determine whether they are true. It is illegal in the United States to make such medical claims without adequate scientific support. They are doing these very things in other countries as well around the world.

I spent over 18 months conducting an extremely exhaustive review of the medical literature and read every single study relevant to blenderized diets and tube feeding. I am forming a letter and a packet showing, through both science and anecdotal stories, that tube-fed people are being made very ill by the current tube feeding protocols.

I will then have a petition requesting that the World Health Organization look over this packet and conduct a search of the literature themselves and develop recommended standards for enteral nutrition that are based on actual data and to make a call to governing agencies to take legal action against the companies that have made unverified, illegal medical claims about their products.

These packets will also be passed out to healthcare facilities, providing education that is desperately needed.

How you can help:

1.Donate to help advertise this project here.

2. SIGN UP TO GET SIGNATURES. With enough signatures, we can make this happen. It’s a massive project, and it will take work, but if we have enough support from the public at large, they will listen. This is why the first two projects mentioned here are so extremely, vitally important to participate in and support because this will widen the number of people interested in THIS project substantially.

Sadly, I have reached out to many influential people in the field of nutrition, such as Dr. Michael Greger, Dr. Neal Barnard, Joe Cross, and many, many others asking for help in raising awareness on this important issue, and none have expressed any interest in the very first step of learning about this matter more to determine whether they want to contribute in some manner so tube-fed people receive better nourishment.

While I mean no disrespect to them, as I respect them VERY MUCH and appreciate all of the hard and positive work they have accomplished, it seems whenever a person has a feeding tube, those so radically passionate about proper nutrition and its many benefits grow silent. I refuse to let that get me down. It just means we really have our work cut out for us.

So, folks…we are on our own, at least for now. We know our tube-fed loved ones deserve the same nourishment as those who eat by mouth. We are powerful. We DO have a voice and through these projects, our voice will grow more and more. So many of us have already faced and conquered enormous battles.

I myself have stood screaming hysterically in a PICU hallway as my baby, who had turned blue, was being emergently placed back on a ventilator, and I did not know whether he was going to live. I have handed my own child over for very invasive surgeries truly not knowing whether I would ever see him alive ever again. I have made my way from my hospital room to the NICU in very poor condition, barely able to move so I could sit next to my tiny baby as he fought for his life.

I have been through severe traumas, and I’ve come out the other side a better, stronger person. I saw how sick these recommendations made my child. I saw him nearly die because of the very practices I have mentioned here by these companies. I saw how much better he got when his body was given the nourishment it needed and that science supports.

So many of you reading this have experienced a similar level of traumas. And you are still here, still advocating for your child, still living life each day no matter how difficult it becomes. You are so capable. You have already proven it. Woe to anyone who tries to stand in the way of a mother fighting for the health and life of her child. This is a huge task, but WE ARE BIGGER. WE ARE STRONGER. WE ARE MORE POWERFUL.

You will be hearing more about this particular project after the new year. I will also then be simultaneously launching Bradley’s Voice, the non-profit organization with the mission of “Educating and advocating to get real food into the tummies of tubies everywhere.”

Someday, people will hear about the feeding recommendations tubies used to be given and they will find it laughable, hard to believe anyone could have believed such a thing. There was once a day that doctors recommended specific brands of cigarettes. We have a hard time understanding how that was possible, but it all changed because a group of people demanded that the scientific data be adhered to by the medical profession. Someday, we will accomplish the same in the world of enteral feeding.

Please consider the variety of ways you can contribute to and participate in the success of these important projects. And please email me any time with questions or ideas.

Let’s do this!

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