Those who are more engaged in my blog will surely have noticed I have not been posting as often as I once did for quite some time. I haven’t been following through on answering emails nearly as well as I used to, either. I receive a lot of emails via my website, and I haven’t been keeping up for a while now.
I had not mentioned this online, but the truth is that I have been rather sick this past year after having some medical issues progressing for the past couple years. Lack of diagnoses piled on top of misdiagnoses have left me with increasing suffering, making it more and more difficult to keep up with this website.
I love our community, and I sincerely apologize to so many of you for each incident in which I failed to follow through answering emails. I enjoy hearing from every one of you. I have kept up with Crunchy Coaching requests, but little else regarding this website.
Being a mom to Bradley and providing for him had to come first as I’m sure you all will understand and support.
I have had an increasingly difficult time eating and drinking. I have had terrible abdominal bloating, pain, and nausea that has grown worse and worse. This past year, it all went over the cliff. I have spent many long nights on the bathroom floor crying for hours in agonizing, excruciating abdominal pain that could not be relieved, and I have lived through many days of sleep deprivation as a result.
I finally ended up in the hospital again in December. I could not eat or drink at all. I was in the emergency room shaking uncontrollably from such excruciating pain. There were concerns I had a bleeding ulcer, so an upper endoscopy was done after I was admitted.
The endoscopy showed that food I had eaten over 24 hours before was sitting in my stomach, undigested. Pieces of lettuce and tomato were clearly in view and recognizable. And everything changed.
In the end, I was diagnosed with gastroparesis, and it turns out my case is rather severe.
Gastroparesis means stomach paralysis. Damage to the vagus nerve causes the muscles of the stomach to become paralyzed so the stomach cannot properly churn food to mix it with gastric juices and move the food forward. I have idiopathic gastroparesis, which means the doctors have no idea what caused this to happen to me. 1/3 of people living with gastroparesis are in the same boat. For whatever reason, my stomach just does not work anymore.
Idiopathic gastroparesis is slightly different in its symptoms than those with gastroparesis for known reasons such as diabetes. In most cases of gastroparesis, nausea and vomiting are the primary symptoms. With idiopathic gastroparesis, abdominal pain tends to be the primary complaint with nausea and vomiting being secondary. It explained a lot.
In retrospect, I’m unsure why I did not put two and two together much earlier. I’ve had many episodes in which I have vomited food 10 or more hours after consuming it. Maybe TMI, but the food was not digested at all and was clearly recognizable each time.
In the spirit of transparency, I will admit this was difficult to accept. Through it all, I had never considered the possibility that I had a chronic condition that could not get better. I had assumed once the issue was finally identified, it would be treated, and I would get better. Or, maybe, it would just go away on its own and forever be a mystery as to what it was.
But, the reality is there is no cure for gastroparesis except in rare cases with a specific cause.
Finding a diet that is going to work for me has been challenging. I have only been able to consume pretty thin beverages. Solid food sets off a nightmare, hours-long episode of unbearable pain and nausea. I could eat some pureed food, but only specific foods (not particularly health promoting foods, either) at a specific consistency (very thin), and I could not get enough in to be adequately nourished each day. I lost 15 pounds in three weeks (fear not, I have extra pounds to spare!).
I was told to consider drinking Ensure™ if I couldn’t tolerate solid food anymore. Um, no.
On top of all of that, the very low fiber diet I was consuming was causing terrible constipation…not fun or helpful. It was helping my stomach, but not doing my colon any favors.
I have helped many families with a child with gastroparesis living with a feeding tube get off formula and onto a blenderized diet. But, there have been some families that I was unable to help. The smallest amount of any pureed food caused terrible pain and nausea. In these cases, I had to recommend continuing on formula and to try food again at a later time to see how it goes or turn to a j-tube and feed pureed food through the j-tube. It began to sink in that I might eventually be faced with the same options.
If you have followed my blog for long, you know that I’m big into plant-based eating. A plant-based diet resolved a lot of issues relevant to chronic pain for me. It had also greatly helped Bradley (and it still is helping him). To be told to eat low fiber and to avoid fruits, vegetables, and whole grains, etc. was a horrifying proposition for me.
I was given a pamphlet with a suggested gastroparesis diet. It was loaded with sugar and almost void of fruits and vegetables. I threw it in the trash. I decided if it came to it, I would get a j-tube before I would eat this way. My stomach may have stopped working, but I still have a cardiovascular system, etc. to think about.
And then I got an idea.
There is a new product out in the enteral world called Whole Story Meals. I had gotten some to try with Bradley, so I had some on hand. Whole Story Meals consists of freeze dried, powdered food that you mix with a liquid, much like you would a powdered, synthetic formula. But, it is made of 100% real food. It has plenty of natural fiber, which my colon would certainly appreciate if I could manage to get it to move out of my stomach…and maybe, just maybe, I thought, I could tolerate it because when it is mixed with liquid, it is very thin.
So I tried it. I poured a cup of almond milk into a blender bottle, added 1 scoop of the powdered food, and I shook it up. I I drank it through a straw…because, you know, it’s more fun that way. And my stomach felt great. I did not have bloating. I had no pain. I had no nausea. It had been a long time since I had consumed food and been able to say that.
So, the next time, I tried 2 scoops in 8 ounces of almond milk. I was feeling hopeful upon seeing how thin the consistency was. And again, I felt absolutely great. I had found a way to consume foods I could not tolerate in solid or pureed form. I was eating fruits, vegetables, and whole grains without issue.
Even better, all that natural fiber meant I could finally say adios to the constipation. Sayonara, baby! I’m sure my gut microbiome is much happier, too.
Since then, I have been consuming 2 scoops of Whole Story Meals with almond milk for two of my meals each day. The rest has been homemade soy milk and some pureed, thin food to the degree I can tolerate.
And I’ve been doing much better. I’m not in terrible pain every day. The nausea is mostly in control. All while I’m consuming only real food without synthetic formulas. And now, I am wondering if a solution has been found for those living with gastroparesis who have been unable to tolerate pureed food through a g-tube.
Even for those who have been able to tolerate pureed food but were forced to use low fiber, less nutritious foods because the opposite simply wasn’t possible…maybe this is a way to change that. I am excited at the possibilities for these individuals and families.
I feel like I am getting my life back.
I packed up Bradley and I, and we took off to Cambodia for four months to rest and enjoy this beautiful country. The opportunity arose to do this, and I snatched it up.
We are resting and relaxing after a very difficult year. I am focusing heavily on spending quality time with him because he’s had to do without somewhat this past year. He’s only going to be a small child for a brief period of time, and I want to embrace as much of it as I can.
I am still adjusting to the idea that I can no longer go out and eat whatever food I wish and that my options will be rather limited now. Vegan nachos, one of my favorite foods, is something I won’t be able to have anymore, among many others. It sucks.
Shortly after I was discharged from the hospital, we had an unseasonably warm day, and I took Bradley to a small theme park called Santa’s Village. I had been feeling pretty down about all of this. We rode the Tilt-a-Whirl together, and as we spun around, I looked down and saw Bradley smiling and squealing in pure elation. My heart immediately was overflowing with joy.
I realized in that moment that, paralyzed stomach or not, there is a lot of happiness in my life and my life will still be very good. I have felt much better ever since.
I’m also getting more active on this website here again now that my digestive issues have greatly improved. I’m working on some books that have been waiting on the shelf for me to get to as well (guess what…a second edition of Stand for Food is coming soon with updated research and more! You will also soon see a book by me all about tube feeding and the gut microbiome!).
I’m doing better, and I’m still consuming a nutritious diet of whole food. I’m back. And I already have some posts planned that will be coming soon. I will also have my podcast up and going again as well…yep, I packed up my equipment and brought it here to Cambodia! I’m hopeful that I will be doing an incredible, very special series while in Cambodia with some special guests, but I’m still getting some things together to make sure it will work out. Definitely stay tuned.
*None of this is intended to promote one product over another on this website. In fact, as I write this, Bradley has two suitcases’ worth of Nourish, made by Functional Formularies, that we brought along because drinking one pouch each day has proved so important for his gut health and motility. This also made this trip possible for us.
**Also, I was not paid to write this article nor would I ever accept payment to write information on this website. You will always have honesty and transparency from me without financial motives. I truly am hopeful that many individuals and families living with feeding tubes who have not tolerated pureed food no matter what has been tried due to gastroparesis or other motility issues will have an option now that will work. And that was worth writing about.
*You will notice a lot of ads throughout this post if you are on a phone or tablet. I do NOT ever sell advertising on my blog. All advertisements are from WordPress.
I recently attended a medical foods workshop organized by the Healthcare Nutrition Council in Washington D.C. I chose to attend this workshop because the Healthcare Nutrition Council is a lobbyist group funded by Abbott, Nestle Health Science, and Nutricia.
Given the highly unethical behavior I have witnessed from Abbott, Nestle Health Science, and Nutricia, I felt it pertinent to see what they were doing at this workshop. Something about this simply did not smell right to me.
Abbot has conducted horrifically bad research with shockingly and appallingly poor experimental design. Their studies violate the most fundamental of scientific principles for the purpose of obtaining skewed data they could use to increase sales.
Nestle Health Science has used this very data and written articles of their own that also violate fundamental scientific principles and ethics, and they did so to increase sales.
Nutricia’s Neocate formula was shown to cause a severe deficiency in some children that caused them to develop a very dangerous and potentially fatal bone disease that left multiple children injured and/or permanently disabled. They said nothing and took no efforts to inform medical professionals or consumers of this issue. A class action lawsuit is currently underway.
I could go on. Any place funded by these people is worth keeping a close eye on.
So, Bradley and I headed to D.C.
I’m not the only one that wanted to keep an eye on these people. The entire trip was funded by individual, personal donations of members of the blenderized diet community. The money was raised within a few days. Our community spoke loud and clear.
The Healthcare Nutrition Council
First, let’s talk about the Healthcare Nutrition Council. Supposedly, they exist for the purpose of influencing policy and regulations to increase diagnosis and treatments for malnutrition. Of course, those funding this place believe the solution for malnutrition is their fortified milkshakes that they call medical foods, products that recent research has shown increase health complications, GI symptoms/discomfort, complications resulting from respiratory illnesses, emergency department visits, and hospitalizations. Only the poorly designed research of the mentioned companies shows otherwise (learn more about this poorly designed research in this podcast episode).
The Healthcare Nutrition Council has openly advocated against you and I’s rights to know specific details about products made for tube feeding. Their argument was that it is available by prescription only (which actually is not true since these products can all be ordered from Amazon and other places without a prescription). According to their letter, if a doctor decides the product is beneficial, the patient has no reason, or even the right, to know any further information about the product or have any sort of opinion about its use. Of course, they did not come out and say that, but that is what they meant. You can read about this here in their own letter.
Be aware, the very doctors prescribing these products often know virtually nothing about them. I have advocated for many, many parents over the past four years, talking to doctors or dietitians. Of the large number of times I’ve asked if they were aware of the ingredients, not one time was a single one of them able to tell me a single ingredient of the products they were prescribing. Not once was a single one of them able to give me a ball park figure as to how much sugar was in the product. Not once. They don’t want patients to know, and they do nothing to make sure doctors and dietitians know.
There are details of food products that orally-fed people are considered to have the right to know about. Whether the product contains a bioengineered ingredient or how much sugar is in the product are examples of such details. Specific information has to be included on the label so consumers can know and make an informed choice. However, as soon as a person receives a feeding tube, that right, under the current system, ends.
I know why the Healthcare Nutrition Council wrote the letter mentioned above. Those that fund the Healthcare Nutrition Council have had an easier time convincing the medical profession to push these products than they have had convincing individuals and caretakers to use them.
They take doctors, nurses, and dietitians out to lavish steak dinners. They wine and dine them as they talk up their poorly designed research, leaving out important details that would show just how crappy the studies actually are. And, it seems, no one who attends such dinners double checks this research to evaluate its quality. They leave inspired to prescribe these products to their patients in response to marketing schemes rather than legitimate scientific data.
But, moms, dads, caretakers, etc. are in the trenches watching their loved ones suffer each day due to the use of these products. We are not so easily convinced. So, their efforts have centered around withholding information from patients and caregivers and leaving it in the hands of the medical profession whom they have had an easier time manipulating, unfortunately.
(To learn more about the devious practices of these companies, check out my book, Stand for Food).
In other words, they are not on the side of patients. And this is what makes the information presented below particularly alarming.
Onto the workshop itself…
The first day, I sat through a series of presentations that, together, lasted several hours. They began by describing the outdated FDA regulations regarding medical foods. They especially loathed that in order for a product to be considered a medical food, it could not be used for the dietary management of an issue that could be adequately addressed through the modification of the normal diet. They want this definition of medical foods changed to not include this.
“FDA’s narrow interpretation of medical foods subjects specialized products to the regulatory framework that applies to foods for the general population. Most notably, if FDA concludes that a specialized food fails to meet the agency’s narrow criteria for ‘medical foods,’ the food will be subject to FDA’s regime for health claims and structure/function claims.” (find the full article here)
They literally complained that the products they make are required to follow the same rules as those for food in general. They are complaining that they have to treat patients who have a medical issue with the same respect as those who don’t. They are complaining that people living with medical issues are thought to have the same rights as everyone else.
What rules are they talking about? Right now, you can’t make a medical claim about a food product without adequate data to support that claim. They want to be exempt from that rule. Right now, you cannot say a food product is designed to treat a specific medical condition without adequate data to support that the food product actually does do that. They want an exemption from that rule. This is what they desire to see changed.
And it’s no wonder that they want to see this changed. I have heard them make medical claims about their products numerous times. They already are breaking the law. They tell doctors and dietitians their products are gentle and easy to digest. They claim they are the remedy for a tube-fed person who is vomiting or experiencing reflux. “Oh, the kid is vomiting on a standard formula? Switch the child to a much more expensive elemental formula because it is so gentle and easy to digest.”
Of course, they don’t want the law to require them to provide data to support that claim because the data actually shows that for the vast majority of people, both standard and elemental formulas for enteral nutrition increase vomiting and reflux. They can’t come up with data to support these medical claims because the claims are not true. In other words, they desire for the law to look the other way when they lie about their products.
They went on about how the FDA’s definition of medical foods (especially that it has to be for a condition that cannot be managed through modification of the normal diet alone) is very unclear and ambiguous. Is it? If someone needs an altered diet, and it can be accomplished by simply changing the foods he/she eats, why would the person require a specialized medical food in the first place?
What I take from this is that they want to be allowed to feed people their Pediasure™, Ensure™, Boost™, Elecare™, Neocate™, Alimentum™, Ketocal™, and other such beverages to people who do not even need them. Since the law is making this difficult to do, they are upset.
They focused on the question, “What constitutes a normal diet?”
Since that isn’t well-defined, the regulations are unclear…according to them.
They have a point to a small degree. What is a normal diet? While we could spend days discussing such an issue, I can make one definition quite clear: a normal diet consists of actual food. I don’t know anywhere in the world in which a diet of sugar, oil, protein powder, and synthetic vitamins is considered normal. So, at the very least, a normal diet consists of actual food, whether we are talking about pasta, roast beef, rice, vegetables, or whatever else.
Normal diet = food.
Abnormal diet = bizarre concoction of sugar, oil, protein powder, and synthetic vitamins.
Which specific foods a person eats and considers normal will vary widely between individuals. But, we are all eating food. That one aspect is considered normal across the world.
So, in order for someone to be fed a product like the formulas these specific companies make, federal regulations state that it must be given for a condition where simply changing which foods the person eats (whether orally or by tube) is not adequate at managing the nutritional needs of their medical issue. And they do not want such regulations.
Why? Because even though such conditions exist, they are quite rare. If these companies have to adhere to the FDA regulations, they will have extremely few sales, especially as they are pushing to enter the market even more for orally-fed people.
The rest of the day consisted of presentations about the glories of formula. That is an exaggeration, but still, nearly every problem that was discussed, formula was identified as the solution. For example, a clinician shared a presentation about the keto diet for the management of seizures. The keto diet has most certainly been shown to be effective at reducing or even eliminating seizures in many people.
He described their program at his healthcare facility for families with a child who is transitioning to a keto diet. He largely referred to children who ate orally. He explained that for the transition, the family is in the hospital for three days, and then, they are sent on their way without any additional support at all. “They are on their own from there” were the words he chose.
Not surprisingly, compliance was difficult under these circumstances. The solution? A keto formula, of course. Not increased support. Not longer term support. Not help. Formula.
But, under the current FDA regulations, Ketocal™ formula cannot technically be considered a medical food because a keto diet can be achieved through the modification of the normal diet. Thus, Nutricia cannot make as much money through sales of Ketocal™ given that insurance will not cover it for oral consumption. This is why they want the laws changed.
I noticed they did not mention how many tube-fed children vomit on Ketocal™ formula. I know a large number of families with a tube-fed child who was extremely ill while being fed Ketocal™, but their child experienced relief and improved health when fed a keto diet of real food.
This went on all day. We had a break for lunch that was provided for us. I looked around for the formulas they were touting since they apparently are superior to food…but, we were not offered any. If these products are so great, you’d think they would have offered samples.
Another presentation was given which was both incredibly disturbing to me and absolutely appalling. It was about the fact that in healthcare facilities, when a tube-fed patient is vomiting, it is frequent for nurses and caretakers to stop feeding the person for a while. He said this is a laughable practice, and it is ridiculous and silly. “It’s comical,” he said. “It’s really comical.”
He could not understand why nurses and caretakers do this. I tried to find him afterward to explain to him exactly why they do this because I have done it myself. However, he left in a hurry, so I lacked the opportunity.
Nurses and caretakers stop feeding when vomiting is happening because force feeding a product to someone you care about when they are throwing it up and when it is causing them to suffer is an indescribably terrible and overwhelming act. There were plenty of times, when my son was vomiting many times throughout the day every single day, that I stopped the feeding pump and turned it off for a while. I could not bear it anymore (you can read more about his story here).
I cried EVERY. SINGLE. DAY. Enduring those months was legitimately more emotionally, physically, and mentally damaging to me than handing my baby over for open heart surgery was. My son was suffering terribly, and I did not know what to do to help him. The only relief he experienced was when I stopped feeding him temporarily. So, I often did so even though I knew he had to be fed. It was so unnatural for me to continue doing something that caused my child to suffer in agony. It is unnatural for most people to do things that cause others to suffer in agony (though this seems to come fairly naturally to the companies mentioned here).
I bawled hysterically on a regular basis. I threw a baby bottle across the apartment one day, accidentally breaking a window, in rage that my child had to suffer this way. Nothing about any of that was comical. Nothing about that was laughable. Nothing.
As a doctor, the guy giving the presentation comes by on rounds or sees a family during an outpatient appointment. He doesn’t personally experience this trauma because he is not directly participating in it. Nurses, parents, and caretakers are living this day in and day out. He has no idea what it is like to push something into the body of someone he loves over and over throughout each and every day that makes his loved one suffer. If he did, he would not find it silly that people simply stop feeding the person at times as they are desperate to offer relief.
The discussion should have centered around the fact that these miraculous formulas they talked about all day make the vast majority of people violently ill. Why not invite me to stand up there so I could describe how devastatingly ill these formulas made my child? Why not invite someone to describe the dishonest and unethical practices that had led my son’s medical team to believe these formulas were gentle and easy to digest when they actually are not?
Why not have me share how my decision to stop using these formulas and instead, feed a “modified normal diet” gave my son his life back and how his story is not atypical, but extremely common in the tube-fed community.
It has been over a month since I sat through those presentations, and I’m still enraged.
So, that was day one.
On a more positive note, I did make some great connections that day with some other people attending who were basically there, like me, to spy on these people as they were also gravely concerned with what this organization is up to. Those connections made the trip to DC well worth it. I will share more on this later.
But, it seemed the vast majority of individuals at the workshop were either members of the industry getting together to talk to themselves or people who were spying on them.
The focus changed. I know a lot has been said, but perk back up because you need to know this.
They said that now that they have shown how vitally important these formulas supposedly are, it was time for action. They want to push political leaders to provide funding for the FDA to change its regulations for medical foods in the ways I described and more. And, of course, they want to be involved in that process.
These are companies that have conducted shockingly unethical research. These are companies that have aggressively fought to keep us from feeding our kids food, a “modified normal diet.” These are companies that have pushed insurance companies to refuse coverage of products made of actual food and to cover only their cheap, high-profit-margin formulas instead. And they want to take part in changing FDA regulations.
They want to make it legal for them to lie about their products. They want it to be legal to make medical claims without any supporting data.
Let’s be clear about how far these companies are willing to go and violate basic ethical standards.
Recently, Nestle Health Science offered a large, national DME a special deal. They told the DME (provider of Durable Medical Equipment) that if a specific percentage of their clients were receiving Nestle products, Nestle would give them discounts and rebates to increase the DME’s profits.
The DME then formed a large team of individuals to call their clients that use products made by Functional Formularies and Real Food Blends to push them to switch to a Nestle Health Science product. Think about this. Clients were being pushed by total strangers to change products not because the change was better for the client’s health or nutritional status. Clients were being pushed to change products so the DME and Nestle Health Science could make more money.
And by the way, the Nestle Health Science products are absolutely ridiculous and do not even begin to constitute the definition of a balanced diet. So, such a change would mean transitioning to a product that will not contribute to optimal health and is less nutritious than the products the clients were currently using. Again, none of this was about the best interest of the patient. It entirely centered around profits and nothing more.
If anything needs changed about federal regulations and medical foods, it should involve the addition of a law making such actions illegal. Remember the letter saying these matters should be left to doctors? It seems they pick whichever position benefits their pocketbooks regardless of inconsistencies and hypocrisies.
And by the way, while Kate Farms was not represented at this workshop, they are pulling some more shady stuff, too, that is similar to this. I am still gathering information about the specifics and will report on that at a later time.
Do they really care about malnutrition?
Abbott and Nestle Health Science often cite a study showing that when elderly or ill people unable to obtain and prepare food adequately are sent home after discharge from the hospital, they are less likely to be re-admitted within a certain time frame if they are sent home with these nutrition shakes so they have some sort of nourishment. They use this study to imply there is something particularly special about these shakes (they are sugar, oil, protein powder and synthetic vitamins).
Of course, nutrition shakes are better than not having enough to eat. However, if these companies actually cared about these people and malnutrition, they would make a nutrition product that makes sense to feed to a person who is ill and frail. Think about when you are sick and have little appetite. Do you ever feel, during such times, like consuming a rich, sweet beverage like a milkshake?
What foods do we tend to turn to when we are sick? Soup would likely be the most common answer to that question were I to survey the general population. We don’t drink milkshakes when we are sick. We desire savory foods like soup.
Many people have memories of an elderly loved one choking down an Ensure™ or Boost™ during the final stage of their lives because supposedly, it’s so good for them. Imagine if, instead, these same people received prepared, smooth, creamy, savory soups filled with vegetables, easy to digest grains, nutritious broths, and flavorful seasonings in a package they could warm and drink. First, this would be a much more enjoyable beverage to consume. Second, it would be more nutritious and health promoting.
But, you won’t find such a product made by any of these companies because the fortified milkshakes they produce instead carry a much higher profit margin. Sugar is cheaper than grains. Synthetic vitamins are cheaper than vegetables and properly prepared broths. They would make less money by producing a product that actually provided optimal nutrition, so they do not do so.
If they actually wanted to address malnutrition through the best treatment possible, they would make products that carry a greater endorsement than that they are superior to starvation. Does it really speak that highly of a product to say, “Hey, research shows our product is better than starving to death!”
At the workshop, they kept talking about all the studies done on these formulas. Yet, many of these studies do one of two things. First, they are like I already mentioned in which they compare the formulas to starvation. Starvation is easily remedied with access to food. There is no need for expensive, overly priced formulas for situations like these.
Second, they are studies in which they take a group of children or adults who are already fed a formula well established to make most people sick, they switch them to a different formula, and then, report that the people did not get any worse after the switch.
These are hardly well supported products, but they like to throw around numbers like, “There are 1,200 studies on medical foods” to make them sound like they are better than they actually are. For all of their talk about scientific studies, they failed to make a single mention of the studies that have consistently shown that almost everyone does dramatically better when fed food instead of formula.
I noticed none of the companies that emphasize nutrition using real food were invited to attend, speak at, or sponsor the workshop. It were as though, for those two days, those companies did not even exist.
I could share much more about the terrible deeds chosen by these companies, but they were shared with me by individuals currently working in the industry, and I am not at liberty to make that information public.
These are the people who want a hand in the modifying of the FDA regulations surrounding medical foods. Nothing could be more dangerous for families with a tube-fed family member or any family member with an illness that requires dietary management.
The time to act is now. They are going to be pressing political leaders to champion their cause. We need to do the same. The FDA regulations do need modified and updated, but they must be done so in a way that benefits patients and not the industry. That is not what the Healthcare Nutrition Council desires. It is not what the industry desires.
I visited the ASPEN conference last March (you can read about that here), and I was told by a dietitian who presented there that everything happening at that conference was not about what is best for patients, but what is best for the industry. ASPEN has to keep its financial donors happy, so their priorities are found there (ASPEN was in attendance at the workshop in D.C. and shared presentations as well).
The industry’s goals have nothing to do with what is best for patients, and therefore, we absolutely cannot sit back and allow the industry to influence FDA regulations.
It’s time to get politically active. There is a lobbyist group in D.C. advocating against our best interests, and we need to do something about that. I would love to hear your thoughts on how we, as a community, can increase our political impact and use that to produce the changes that actually need made such as requiring that real food always be used to address malnutrition unless there is a specific reason not to.
We are not small. We are powerful. We are very capable of accomplishing this.
I will also be working on a project, and I am inviting all of you to contribute, if you desire, to raise awareness to the general public about what is going on. Someone at the workshop who works for Abbott said, “Of course, any legitimate company in this industry puts the patient first.”
So, is Abbott not a legitimate company in this industry then? Did they put my son first when they lied to his doctors and told them Elecare™ was gentle and easy to digest? Did they put him first during all those months of his life when he was being made so debilitatingly nauseated by their product that he missed out on important developmental time?
Were they putting him first when they neglected to inform his medical team about the studies that show these formulas increase the risk of very serious medical issues that he ended up suffering from and also increase vomiting and nausea in most people which he also suffered from? The scar that runs from my son’s chest to his belly button will tell you whether Abbott put him first. My son nearly lost his life as a result of the practices of these companies.
Did they put him first when they intentionally conducted poorly done research to manipulate the medical profession with skewed data?
No, they didn’t. They did not put my son first. My son is missing a piece of his colon because of the damage and injury done to him by these unethical practices. We are still dealing, to this day, with the developmental delays that resulted from him being paralyzed by nausea, too nauseated to engage with the environment and grow, for several of the formative, vital months of his early development. We are also still dealing with the GI complications caused by the damage done to his GI system from these products.
To sit in a room and listen to an employee claim that they put their patients first was enough to make me want to start flipping the tables upside down throughout the room. But, I sat quietly, thinking and forming plans.
So, I want to hear your stories. If your child was vomiting, nauseated, more frequently hospitalized, or experienced any other complication while on these enteral formulas, I want you to tell me what product your child was on, what your child experienced as a result of being fed these formulas, and the improvement your child experienced after the cessation of the enteral formula.
I will transform these individual stories into a series of videos and slowly add them to a YouTube channel dedicated to this purpose, and I will formally advertise these videos/stories to raise awareness that this is happening and invite listeners to join our cause as we demand something be done about this.
Every family deserves FULL information about these products, including the ever growing body of scientific literature that says these products do not promote health and are ultimately harmful for most people with only rare exceptions.
To contribute, include in your story:
The product your child was on.
The complications experienced (examples: vomiting, constipation, bloating, frequent infections, frequent hospitalizations, or whatever else)
Your and your child’s first name. If you do not wish to share this, include a different name to represent yourself and your child so you can remain anonymous.
Consider including a picture(s) of your child. This is NOT a requirement, but will have a greater impact so people can see the child who was impacted.
End the story with “Abbott did not put (name) first.” Or “Nestle Health Science did not put (name) first.” Or whatever other company made the specific product that caused your child to suffer.
Email your story to me at CrunchyTubieMama@gmail.com along with permission to share the story publicly.
Then, I will get to work. I am going to start with Bradley’s story. My goal is for each video to run between 2 and 4 minutes in length.
Also, let’s talk about what to do, politically, to address the issues presented here. It’s time we stand up and take action. If we don’t, they will, and our community will suffer for it while they laugh their way to the bank.
Have you heard? The final book in my series, The Quest, is coming out soon! Now is the time to get caught up on this magnificent adventure so you will be ready for its arrival!
Learn more about this series in the video below. And by the way, each book has themes relevant to good nutrition and feeding tube awareness woven into their thrilling stories of adventure, magic, and heroism.
What are people saying about The Quest?
“We couldn’t put it down once we started.”
“Captivating from the very first page!”
“A real page turner.”
The Quest series, beloved by children and adults alike, is available on Amazon (see links below the video!). Learn more about my books here!
My heart was pounding in my chest. I was significantly more nervous about this than I had anticipated. I wasn’t even invited here…well, I was, but not by these people. I had a flashback as I recalled what had brought me here…how it all began.
My son was violently ill on enteral formula for months. He was debilitated by nausea. And real food through his feeding tube had made that better. And so, feeling inspired to help others, I started this blog. I fully expected a couple hundred people would come to it in total, and I’d be able to offer some help to them like another mom had once helped me. And that was enough for me. That was all that I had planned.
Now, three years later, here I stood in a room packed with dietitians, doctors, and other healthcare professionals who had just listened to a presentation on blenderized diets at the ASPEN conference in Phoenix, Arizona. I stood, ready to speak up about the many common recommendations regarding tube feeding that are not supported by any scientific data at all. I was ready to speak for the online community of 10,000 tube-fed people and their caregivers whom I represent and the near 100,000 people who have visited my blog. Yes, things had gone quite differently than I had originally planned.
So, why was I so nervous? I’ve attended conferences before in my particular field. This really wasn’t that big of a deal. The Q & A following the presentation was underway, and as I waited for my turn at the microphone, I came to understand why I was suddenly and unexpectedly so shaken up. In a way, I was crashing their party. I showed up uninvited because my thoughts and input were not welcome. Yet, here I was, preparing to share my thoughts and input anyway.
I looked across the room and felt every incident in which I have been spoken to in condescending and disrespectful ways by a dietitian. I remembered all of the times I had been treated like I do not matter by a healthcare professional. I felt intimidated as I considered I was about to speak in a room full of people who looked down on me.
But then, I remembered all of the times in which I had been treated like I do matter. I recalled the many emails from dietitians from around the world that I have received, thanking me for writing my book, Stand for Food, and explaining what is so wrong in the enteral industry. I remembered the numerous times members of my son’s medical team referred a parent to me for help with tube feedings.
I remembered the countless emails from moms whose children had been transformed by something as simple as real food after I’d helped these moms learn how to provide it for their tube-fed child. I reminisced about the many, many times a mother had come to me with a recipe from a dietitian for a blenderized diet that was making her child vomit terribly, and my recipe helped her child get better.
And then I knew. I may not have been invited to share my experiences with these people, but I most certainly should have been.
I had helped more mothers learn how to feed a blenderized diet than anyone in that room. I had spoken with more tube-fed families than anyone in that room ever will. Most likely, I had read more scientific studies relevant to enteral nutrition in their entirety than anyone in that room. And most certainly, I had prepared and fed blenderized meals and snacks through a feeding tube thousands of times while most or all of them had never done so a single time in their lives.
I deserved to be there. The tube-fed community deserved to be spoken for. And no, I’m not the only one who could do the job and do it well. But, I was the one who was there. My heart rate slowed. The shaking stopped. I wasn’t nervous anymore because I firmly understood I had nothing to be nervous about.
This was just a tiny step amongst many large steps that need to happen to improve the lives of people living with feeding tubes, but we have to start somewhere. And so I took the tiny step. I spoke into the microphone.
“Hi, this is Bradley, and I am his mother. I have fed my son a blenderized diet for 3 ½ years, and I lead an online community of over 10,000 people who feed a blenderized diet.”
People who had been looking toward the stage or down at their phones suddenly turned and stared at me. Were they wondering what I was doing there? Were they excited to hear from me? I had no idea.
“I have a few questions. May I go through them? You stated that children seem to vomit less when fed blenderized diets than on enteral formula, and you stated we don’t know why that is, but that it is probably due to the viscosity. Could I have a response to this statement? If most of us in this room consumed sugar for all of our carbohydrates every single day, we would probably be throwing up, too. I mean, if it is just the thickness of the food, we could just add a thickener to formula and that would solve the problem.”
(By the way, I have known people to try this…it does not solve the problem).
I was then told she meant we don’t have any data to explain why, and this would be difficult for me to understand because I was coming from the perspective of a mom.
I interrupted. “Actually, I am formally educated in a field of science, and I worked in research for several years. I spent over 18 months reading virtually every peer-reviewed scientific study relevant to this topic from 1950 to now. That’s where I’m coming from.”
These people were not going to talk down to me. And yes, it felt good to say that.
They insisted we have no way of knowing if the sugar was the problem. I had more to say on this. But the time I would be up there was limited, so I let it go.
I thanked her for telling dietitians that it is important to not turn clients away when they want to do a blenderized diet because when dietitians do that, they don’t just give up and feed formula. They do it on their own or they come to someone like me. And while that is fine if they come to me…I’m happy to help…the point is saying no to a blenderized diet is not stopping people from feeding a blenderized diet.
I continued. “You mentioned that ‘obviously’ a child has to be medically stable in order to be fed a blenderized diet. Is there any data to support that recommendation since you said it’s so obvious? Is there data that says high sugar diets are better for people that are not medically stable?”
There was a bit of an awkward pause. And so, I continued on.
“I had a mom come to me not too long ago whose daughter was admitted to the hospital on the regular floor. She was told if she was sick enough to be in the hospital, she was not medically stable, and had to be fed enteral formula. The mother insisted formula made her daughter vomit violently, and she required a diet of pureed food.
“The hospital stated they would remove the mother from the hospital if she fed her daughter pureed food. They forced her to feed formula. The child vomited and aspirated so severely, she ended up going into a full arrest and had to be resuscitated. She spent nearly a month in the ICU following that incident. So, again, is there data to support this recommendation because I could tell you many stories of children experiencing severe side effects from being fed enteral formula while they were already sick with something else.”
The presenter said healthcare facilities each have their own policies that must be followed. Which, of course, did not answer my question.
“But, it is information that is being presented at conferences like this that are leading to these policies.”
Someone who had presented on a separate topic jumped in. “We can’t tell healthcare facilities to give something to a patient that may cause an adverse reaction.”
In other words, they apparently believe that feeding a person food might cause an adverse reaction while they believe that feeding enteral formula has no chance of causing an adverse reaction as if there is scientific data to support such a view (and by the way, there isn’t).
For the record, every other child in the hospital that I spoke of was sick enough to be in the hospital, yet were allowed to consume food. If being in the hospital truly meant that a person was too medically unstable to be fed food, there would be no need for hospital kitchens.
I was further told we don’t know if the formula is what caused the vomiting right after a presentation about data that tells us that people vomit more on formula than they do on blenderized diets.
So, just to clarify, there is no scientific data to support that recommendation. They offered none because there is none. This recommendation isn’t so obvious after all. The moderator was getting ready to shut me down, I could tell. I knew it was done. I told the presenter I would appreciate speaking with her afterward, and I waited for her after the Q & A.
I had several more concerns.
1. As I sat during the presentation, the presenter said, “How many of you here have had a mom say she ‘THINKS’ her child is not tolerating formula?”
A wave of laughter moved across the room. I was utterly appalled. I am fed up with healthcare professionals believing it is acceptable for children to vomit 10+ times per day. Listen to the first episode of my podcast here as I share my son’s story. You will learn that to this day, I cannot speak about those terrible months without crying because of how extremely traumatizing that was. It was more traumatizing than handing my baby over for open heart surgery. Yes, it was.
No one would ever laugh about a mother shaking and crying as she hands her baby over for open heart surgery. It is equally inappropriate in any setting to laugh about a mother who is watching her child be made violently ill day after day. My son could not play with toys while he was fed enteral formula because it made him too sick. He was not developing. I cried EVERY. SINGLE. DAY. My son was so sick and in so much pain. NOTHING about that is funny. There is no call for a humorous reaction to such an experience. Ever. At all.
I confronted her on this.
2. I told her there is a double standard when it comes to enteral formula and blenderized diets. There is always a demand for enormous amounts of data to support recommendations regarding feeding a tube-fed person food (you know, food…that thing everyone else in the entire world uses for sustenance) while no data is required at all to support recommendations regarding feeding a tube-fed person enteral formula (a product documented for decades to increase reflux, vomiting, and other GI complications). It seems when it comes to enteral formula, recommendations can just be all willy nilly and made up with no legitimate data at all to back them up, but when it comes to food…what these people themselves choose to eat…there must be large amounts of data before any recommendations can be made. This hypocrisy is unacceptable, and it continues because of presentations like the one I sat in and the lack of people critically evaluating what they are being told.
3. I didn’t take the time to address it, but now think perhaps I should have. She stated in her presentation that a dietitian’s job is to evaluate whether a mother can handle feeding a blenderized diet. If she is late to appointments or often cancels, she isn’t ready for a blenderized diet.
Oh? You can ask my child’s doctors, therapists, my own doctors, and the many dietitians I’ve consulted and subsequently fired because they wanted Bradley on enteral formula…I routinely show up for appointments late and totally disheveled if I even show up at all. Yet, I have fed Bradley a home blenderized diet successfully for 3 years. I lead a community of thousands of people feeding blenderized diets and daily help multiple people, on an individual basis, learn how to do so as well. I have a book about blenderized diets that has sold throughout the world.
Based on her criteria, Bradley is not a candidate for a home blenderized diet, but obviously he is. I’m busy. But, I’m never too busy to feed my child food. Stop making blending so complicated. While I’m thankful for the options available with prepared pureed food, generally speaking, mothers do not have to prove that they are capable of feeding their child food. If there are issues that create doubt, the dietitian should be more involved to be sure the mother understands what to do.
Mothers of orally-fed children do not have to go through an evaluation process so it can be determined whether she is capable of preparing food for her child. I do not appreciate the fact that tube-fed mothers are automatically assumed to be incompetent unless they prove to be otherwise.
If the mother is overwhelmed and she states she would prefer a packaged food product either in full or partially, then, by all means, go for it. But the idea that parents should have to prove that they can feed food to their child before being given permission to do so is incredibly insulting and offensive.
I have helped countless parents learn how to blend. The amount of help each parent needs varies widely. But, I have yet to meet someone who is incapable of doing it at all. It has truly been an amazing experience to work with so many moms who come to me desiring to feed their child a blenderized diet, but are feeling so overwhelmed by the thought and questioning if they are capable because that is how they have been made to feel by a healthcare professional somewhere.
To see each and every one of these moms, again and again, move from a mom who is terrified, feeling incapable, and overwhelmed to one who is knowledgeable, empowered, and leading others is an experience that I will never be able to describe with words. Dietitians, doctors, and other healthcare professionals, if you would just give these moms a chance and support them in these early steps instead of doubting them so often and thinking so little of them, you could experience the same.
We talked for quite a bit. I don’t feel she shared with me what she did with the intention of me posting it to the entire world, so I will respect that. But, I can say this, which I already knew: there are drastic changes that need to happen in the enteral feeding industry. And healthcare professionals are not doing what needs to be done to make the changes that desperately need to be made. So, we, the tube-fed community are going to have do that work ourselves.
And we will. I left. Bradley and I returned to our hotel. I was exhausted after a long day. But, I felt good. Regardless of whether ASPEN agrees with me on this statement or not, I did the right thing. I had done what was in my power to bring the perspective to the enteral feeding industry that it needs to improve the lives of tube-fed people. It wasn’t much. But, I had done what I could.
The next morning, I headed to the convention center for what would turn out to be a very busy day. I wondered if I’d be looked at by many of the attendees as they thought, “Dude, there is that crazy mom that was at the blenderized diet presentation.”
I shrugged my shoulders. They can think what they want. Someone stopped me on the street. “I’m so glad I ran into you. Good job standing up there last night. I’m so glad you came.”
And then someone else came up to me. “I just have to say, I am so impressed with what you did last night. Thank you for standing up and saying what needed to be said. I’d love to chat more. Can I give you my card?”
Before the card was in my hand, someone else came up to me. “That was amazing last night. We need to see more of that around here.”
“You made my trip out here worth it in just those few minutes that you spoke. Can I give you my card? I’d love to talk with you.”
“Hi, I’m a dietitian. I am working on a protocol for blenderized diets at the hospital I work for. Could I talk to you some more? I’d love to hear the real information about blenderized diets.”
I passed out free copies of my book. I collected card after card. It took forever to get to where I was headed because of the number of people approaching me. I have a hell of a lot of people to email.
A physician spoke to me and said, “I know blenderized diets are so much better. And I want my patients on blenderized diets. But, I just feel so guilty adding that burden to a mother. I raised 5 kids, and I know how hard it is.”
I replied. “You raised 5 kids? I bet that was overwhelming at times.”
“Yes, it was.”
“And none of them had a feeding tube, right?”
“At any point in time, did you ever once give serious consideration to the idea of feeding your children nothing but Pediasure because it would make things easier for you?”
Her eyes widened. “Well…no! I didn’t! I never thought of it that way. Wow! You’re right.”
“Whether you intended to or not, what you just asked me implies that tube-fed people are not worth as much effort as orally-fed people. You don’t feel guilty recommending moms of kids without feeding tubes to feed their kids nutritious food. You shouldn’t feel guilty recommending moms of kids with feeding tubes to do the same. We value our tube-fed kids just as much as you value your orally-fed children.”
People listened. Dietitians listened. Doctors listened. And they were eager to hear more. Many are seeing they haven’t been given accurate information. Many are coming to understand that the enteral industry has been focused on what is best for the industry, not on what is best for tube-fed patients. In fact, a dietitian that is closely associated with ASPEN said those exact words to me. And they feel powerless to promote that change.
Many moms feel powerless, too. And dads. And tube-fed people. However, the reality is that we are powerful.
I was then approached by someone who works for ASPEN. I was invited to look into a week about educating parents about malnutrition. Because, she said, that’s the week for parents. This conference was to educate healthcare professionals, not parents…she made that clear by stating that multiple times.
In other words, and perhaps I misread what was being said to me, but it seemed to be insinuated that as the mother of a tube-fed child, this was not the right place for me. I’m happy to be corrected if that was not intended.
It insinuated that people who actually have feeding tubes or people who provide care for a person with a feeding tube have no information or perspective to offer that would benefit the healthcare profession. And if that is what was being insinuated, then ASPEN could not be more wrong.
Whether me or one of the many other very capable mothers I know, someone should have been invited to offer a perspective about blenderized diets who has actually fed a blenderized diet. People in the tube-fed community should have been invited to share what life is like with a feeding tube, the problems we face, and the solutions we have found. I do not suggest this should be done in replacement of presentations by healthcare professionals, but in addition to those presentations. Because we know a lot more than you think.
In fact, the question during the Q & A that preceded mine was one that the presenter admitted she was unable to answer. But, I would have been able to answer it. And I know a large number of people who could do the same. Additionally, there was information about volume, blending various foods, etc., given in that presentation that was entirely inaccurate. And I know that because I’ve blended literally thousands of meals and daily talk to thousands of people who are doing the same.
Dear enteral industry, the tube-fed community is tired of being treated like we do not matter. We are tired of being silenced. We are tired of being treated as though we have nothing to offer to help healthcare professionals improve their skills and gain new knowledge. We are tired of this system that values profits more than the people who are actually living with feeding tubes.
As I stood at the microphone and was told, “Well, we don’t know if the problem was caused by the formula,” my mind drifted to the time period in which the tobacco industry continually stated, “Well, we don’t know if cigarettes are causing cancer.” Because those people were speaking for the industry and not for people.
We are sick of it. Our community is growing angry and frustrated. It is building. We are not small. We have influence. And our community that recognizes this is growing rapidly and will continue to do so.
There are those who are coming to understand the importance and necessity of including us. Everyone else will eventually be left behind.
ASPEN, and anyone else in the enteral industry, it’s time to invite us to be a part of what you are doing. If you don’t, we will show up on our own, uninvited. Because the field of enteral nutrition does not exist for the industry. It exists for people living with feeding tubes. This is non-negotiable.
Do you know why I was out there? I was invited by an organization (I will address this in a separate post…but, I am cautiously optimistic about where this will go moving forward). They paid for my flight, my hotel, my food…they offered to pay for Bradley and I to go do something fun as a thanks for coming out there (we were far too busy to take up their offer).
They did not invite me because of my formal education. I don’t think they even know where I went to school or what I studied because it has never come up. It hasn’t been relevant. They did not invite me because of my years of research experience. That had absolutely nothing to do with it.
They invited me because I am a mom. They invited me because they recognized that they can learn from me. I went out there and we talked for a really long time. And we learned from one another so that together, we can make life better for tube-fed people. That is what should be happening all over the field of enteral nutrition.
I hope this organization will continue this and set an example to others. Because if they do, they’re going to see how much improvement comes when those in the enteral industry take the time to listen to and learn from tube-fed people. And others will see it, too.
It’s time for things to change. It’s time for the tube-fed community to start showing up at these presentations and asking the questions that need to be asked and saying the things that need to be said. Throughout history, any time a significant change occurred that was best for the people, that change happened because people stood up and did what was right.
The data is on our side, so if we just keep pushing, we are going to win.
Freedom. Choice. The ability and right to make informed decisions. These are concepts deeply valued by most people around the world. Sadly, the value of these ideals has not been shown to the tube-fed community. They are ideals the tube-fed community has had to fight for for years.
Hospitals are still forcing parents to feed their tube-fed child formulas that make them vomit. Medical professionals are calling child protective services on parents for no other reason than the parent feeding their child food. Freedom? Choice? Nope.
Parents and patients are being given entirely inaccurate information about the health outcomes associated with the use of enteral formula, removing their ability to make informed decisions. It is happening every single day. But, this is not only happening when it comes to what is being fed through a feeding tube.
ENFit® products for feeding tubes are another example of this occurring. I’ll be clear from the beginning. I am not against people using ENFit® at all. However, I am absolutely against the approach that has been taken with the creation and implementation of ENFit® as it has violated the concepts of freedom, choice, and the ability to make informed decisions from day one for the tube-fed community.
What prompted the development of ENFit® ?
In 2006, a pregnant woman named Robin Rodgers was in the hospital, and someone took the line coming from her IV and spiked it into a feeding pump bag filled with enteral formula. This error resulted in enteral formula being fed directly into her veins. Soon after, both she and her baby passed away.
It was a tragedy, and it should never have happened. In fact, injuries and fatalities from these kinds of misconnections have been reported as far back as 1972. Though rare (24 reported incidents over the course of 7 years), they should be non-existent, given how avoidable these incidents are.
And so, the decision was made to develop a new system for tube feeding so that enteral feeding devices could never be connected with non-enteral devices. And all of this is fine and well.
That is how ENFit® came into existence.
The issue with ENFit® is that it introduces safety issues of its own, and tube-fed people and their caregivers should be aware of these safety issues so they can decide whether ENFit® is right for them. However, that is not what is happening. Further, efforts are being made to force all tube-fed people to use ENFit® products even if they do not wish to do so. This will never be acceptable.
Before I get into more information, let’s think about this. Imagine if orally-fed people were suddenly forced to use chopsticks instead of forks and spoons even if they preferred to use forks and spoons. There would be an outrage. This wouldn’t mean there aren’t situations where chopsticks are a better fit for a person or family. But, we all want freedom to choose. Having a feeding tube shouldn’t change that.
So, what are the safety issues associated with ENFit® ? I’ve spent quite some time looking all of this over, and the following seem to be the primary safety issues.
The bacterial load in the deep moat area of the ENFit® patient side connector is of serious concern.
This is the biggest safety issue, from what I’ve seen, associated with ENFit®. Nelson Report data shows that even when brushed, the moat area in the male side of the connector has a bioburden too numerous to count. This means there was so much bacteria in it, there was more than could even be counted.
Alarmingly, rather than people being told about this issue, ENFit® forged ahead while users remained unaware that this is even a problem. Many who later discovered this information made repeated complaints, which is when patients were advised to clean the connector with a toothbrush or other brushes (the picture above was taken from stayconnected.org).
There are multiple problems with this. First, the moat area has variable depths, depending on the manufacturer. Will the brush reach deeply into all of them? No one has ever checked. Secondly, it’s questionable if this is safe in a hospital setting. A moving brush means spatter of bacteria into the air and onto surfaces.
Third, and most significantly, this method has not been tested to show it even works. Users should be asking, “Where is the safety data related to bacteria in the moat area and this method of cleaning?”
It seems that the patient side connector should always be smooth, without ridges, and without a moat. Were the developers willing to try something else upon this discovery of potentially dangerous contamination? Apparently not.
None of this is to say no one should use ENFit®. However, this is information every user should know about and those who do use ENFit® should use great care in cleaning the moat area.
The point of disconnect when the tube is accidentally yanked or pulled is moved to the actual feeding tube itself.
The screw thread locking system of ENFit® is both a blessing and a curse, particularly for those who are fed via a feeding pump. I myself experienced plenty of episodes of “feeding the bed” and having my child miss out on meals due to disconnections that went unnoticed. While for my child, this resulted in little more than an inconvenience of washing bed sheets and such, for other people, this can be extremely dangerous.
There are individuals that depend on steady tube feeding throughout the night to manage blood sugar levels, and a disconnection can lead to terrible consequences. It should be noted, however, that there is a product designed to address this problem (the AMT Medical Inc. tube clamp).
On the other hand, ENFit® doesn’t eliminate the risk of disconnection. It simply changes the weak point at which a tube feeding system can become disconnected from a person. With ENFit®, that weak point becomes the feeding tube itself. With ENFit®, when a feeding delivery set is accidentally caught or yanked, rather than it disconnecting at the juncture between the feeding set and extension, the force can inadvertently remove the entire feeding tube from the individual.
This can be especially problematic for those fed via a J-tube as they cannot be replaced at home and require a trip to the hospital. Even g-tube users, however, could be injured with a full balloon getting yanked through a stoma.
I have heard from a family with a mother who is J-tube dependent. They were quite worried about being forced to eventually switch to ENFit® as her small children routinely created situations where her tube was disconnected. With a break-free point where the delivery set connects to the extension, this family managed this quite well. This point would disconnect, and they would simply reconnect it when that occurred. However, they are fearful if they are forced to use ENFit® , their situation will become much more complicated as her j-tube could easily be forced out.
All of this is not to say no one should use ENFit®. Parents with wiggly children have often reported strongly in favor of ENFit®. But, as you can see, it’s not ideal for all situations, and this is a benefit/risk ratio that every family should be aware of and have the ability to choose for themselves which system will work best for them. The benefit/risk ratio will vary from family to family and individual to individual.
Some viscous and crushed medications as well as some blenderized food cannot fit through the smaller opening.
ENFit® products have a much smaller flow path than the previous feeding tube systems, which can be problematic for some people. Some medications simply cannot fit through the smaller opening. If a person cannot swallow at all, which many tube-fed people cannot, how else would they take their medication?
Likewise, I know of many children who require a very thick blenderized diet. I have heard from some families who have struggled greatly with ENFit® due to the smaller opening and their love one’s particular needs. What would these people do without access to other systems? In spite of this, efforts have continued to push medical suppliers and hospitals to provide only ENFit® products for tube feeding.
People with specific disabilities and illnesses cannot independently use ENFit® .
Because of the screw thread lock system, some people with specific disabilities are unable to use ENFit® products without assistance while they can use non-ENFit® products entirely independently.
I have a friend who is known online as The Traveling Tubie. He is a disabled veteran and cancer survivor who is dependent on a feeding tube and lives with one arm. In my book, Stand for Food, he wrote a section in the appendix about a dark time in his life in which having a feeding tube took away his independence because he required the assistance of his wife to be fed.
A member of the adult tube-fed community shared a device with my friend that granted him the ability to feed himself on his own in spite of living with only one arm. He found freedom once again and now had opportunities to take classes and do many more productive activities with his life. A forced switch to ENFit® would take all of this away from him. And he’s not alone.
There are other tube dependent people with only one functional arm. There are also many tube dependent individuals living with arthritis or other issues that impact their fine motor skills and dexterity who would find the ENFit® system impossible to use on their own. In spite of this, efforts have continued to push medical suppliers to provide only ENFit® tube feeding systems.
ENFit® products can wrongly connect with another device that would be just as dangerous as connecting to an IV
I mean, this is just ridiculously ironic. The whole point of ENFit® was to avoid dangerous and potentially fatal misconnections of enteral feeding devices to non-enteral devices. Yet, an ENFit® feeding syringe or pump set can fit right into an adult tracheotomy airway. Obviously, sending pureed food or formula through a trach into a person’s lungs would be devastating to the recipient.
While one could argue that it is absurd to imagine someone connecting an enteral feeding device to a trach, is it any more absurd than the notion of someone managing to shove an enteral feeding device into an IV (something that is not possible even if someone tried)?
If the whole reason ENFit® was made was to avoid dangerous misconnections, it defeats the primary purpose if it can be connected to other kinds of tubes that would be just as dangerous. All this made me wonder whether the development of ENFit® was truly aimed at patient safety or whether other motives were at work. And this leads me to my final point.
The process through which ENFit® was developed was very shady and showed very little, if any, consideration for tube-fed people.
I have multiple issues with the process through which ENFit® was developed. It was shady from the start. An organization called GEDSA, which is a non-profit organization, was assembled to develop a tube feeding system that resolved the safety concerns mentioned earlier.
Its original executive director was a guy named Tom Hancock. Prior to becoming the executive director at GEDSA, he was the director of marketing for both therapeutic nutrition and pediatric products for Abbott Nutrition.
All of the poorly done research by Abbott Nutrition that has been used to frighten the medical profession away from blenderized diets (you can learn more about this here, here, and here)…all of the ridiculous claims about how great Pediasure supposedly is in spite of a total lack of valid data to support such a claim…kids being fed over 100 grams of sugar daily in products Abbott describes as nutritious…all of the kids vomiting due to their atrocious products…
This guy was behind a large amount of the marketing that lead to this stuff happening.
I want to make this very clear to show what kind of a person Tom Hancock is. Pediasure is marketed by Abbott Nutrition as a wonderful product that helps kids grow. This is marketed to parents with children who have access to a wide variety of food, and these parents are told there is clinical data to support the claim that their child, who has access to enough food, will grow better if they are fed Pediasure. Remember that while thinking about the studies they cite to support this.
These are the studies they reference:
1. A study on children in Pakistan who do not have access to enough food to consume an adequate amount of calories. In other words, the children did not have access to enough food and were starving. They were given Pediasure, and grew and gained better than they did when they were starving. What a shocker…give a kid enough calories and they will grow better than when they don’t have access to enough calories.
None of this says anything positive about Pediasure specifically. It simply means children will starve if they don’t have access to enough food. This study could have gotten the exact same results by giving the children sandwiches to increase their caloric intake. Yet, this study is used to push parents to feed their child Pediasure even though their child is not starving and does have access to adequate food.
2. Another study claims that kids who are “picky eaters” grew better and had less infections when fed Pediasure than when they were not fed Pediasure and simply offered nutritional counseling. But, they leave out some important details about this study. This study took place in Taiwan and the Philippines, countries where poverty-related malnourishment is extremely common.
The way they determined who was a “picky eater” was completely arbitrary, not well-defined, and at the discretion of the investigators…investigators meaning employees of Abbott Nutrition, the makers of Pediasure.
This is not how science is done. If “picky eaters” are going to be used for a study, a method of defining picky eating that is specific and quantitative should be designed first to determine who would qualify to participate in the study and who would not. Science absolutely requires this. A clear part of this criteria would be children who have access to an abundance of food, but are not eating it.
But, that isn’t what they did. They left it to the discretion of the investigators. That alone makes this a very unscientific study. They used no clearly defined measure to determine who is a true picky eater as opposed to a child who simply doesn’t have access to enough food to insure the children in their study were actually picky eaters rather than children who were starving.
They had the parents list what their child had eaten over the prior 3 days, and if it was not enough food, they labeled the child a picky eater. Well, what if the family simply didn’t have any other food to offer their child?
Why go all the way to the Philippines for a study like this? Abbott Nutrition is located just north of Chicago. Why not find some kids who have plenty of food in their home and are not eating enough right in their area? Probably because they know they wouldn’t get the results they were looking for. Notice in the abstract, they did not even mention what countries these studies were conducted in, which is unusual for a scientific study done in more poverty-stricken areas of the world.
They needed to go, like in their first study, to an area where children were starving. Of course, nutritional counseling won’t help a family if the family does not have access to enough food in the first place. Of course, children being fed Pediasure will do better than children who are literally starving.
Why not provide a control group where the families are provided with enough food for their children and compare how those children do with those who are simply fed Pediasure? Abbott is not interested in a study like this because they know they likely wouldn’t get results that they can twist around to make their products sound nutritious and beneficial to health.
Do I need to go on? I could. They purposely go out of their way to do crappy research and then, twist around the data collected from this crappy research to deceive parents into using these products through false and unproven claims. This is actually illegal in the United States as well as many other countries. And it is unethical in all countries.
This Tom Hancock guy…he was in on this. He helped Abbott Nutrition do this. He was in charge of this bullshit for years while these products made many children violently ill and Abbott laughed their way to the bank.
This is the guy who was put in charge of all things ENFit® . Let that sink in. Is this really someone we can trust to use data properly to develop a feeding system for ourselves or our loved ones?
When ENFit® was developed, by their own admission, whether or not pureed food could pass through the system was never something they took into consideration in spite of knowing how many tube-fed people depend on pureed food to survive.
Was ENFit® truly developed with patient safety in mind? Does Tom Hancock have a history of showing concern for patient safety? No.
Hancock ran GEDSA, funded by donations, to develop ENFit® and used the organization to push to make other feeding devices illegal or ineligible for reimbursement from Medicare and Medicaid. As all this was going on, he was in the process of founding Vesco Medical, a company that would make the products developed through these donations and, if he had his way, would be mandated to everyone around the world, whether it worked for their situation or not.
Then, he left GEDSA and now runs a company that makes these very products. Suspicious? Indeed.
Here is what we know. Adequate testing of the cleanliness of the moat area was not conducted in the development of this product. Shouldn’t this be a primary concern when developing a product used for eating and drinking? Even when it was shown this area has an unacceptably high bacterial load, the pushing of ENFit® forward continued full steam ahead.
We know that this system was shown to be extremely unsafe for use in the NICU (you can learn about this here)…and in spite of it, the development of this system still went full steam ahead. I talked to the new executive director of GEDSA on the phone about this issue, and he said it was determined that the issue with ENFit® that could cause a premature baby to overdose was found to be resolved by tapping the syringe on a hard surface to clear that area where extra medication could build up.
What? I had to express my concern to him being the mother of a child who was born extremely premature. Extremely premature babies have little to no immunity. Any infectious illness, no matter how mild to the rest of us, can be fatal to a baby that weighs one pound.
So much of life in a NICU centers around keeping things sterile as much as is possible while still having people in it. My hands and arms were covered in rashes from the numerous times I had to scrub them throughout each and every day to protect my son. Tapping a syringe on a surface before hooking it up to his feeding tube increases the risk of giving a premature baby an infection. This is not a solution.
Why are we developing protocols for medical devices that involve things like banging the device on a counter top and tooth brushes?
We know that the joint commission refused to endorse ENFit® . That is significant.
We know the needs of many tube-fed people were largely ignored during its development.
Lastly, this entire process of developing ENFit® has used Robin, the woman who lost her life due to a misconnection, as a poster child for their work. That’s a bit odd considering the point of misconnection that resulted in her death was not even at a point that ENFit® addresses in any way. Her IV was connected to IV tubing just fine. A feeding tube delivery set cannot be shoved into an IV port.
The tubing itself from her IV was spiked directly into a feeding pump bag. And the issue that allowed for that to happen was resolved before ENFit® was designed. Very quickly after her death, bags for enteral feeding and bags for IV solutions were changed so that this could never happen again.
ENFit® would not have saved Robin’s life. ENFit® products do NOT address where these misconnections were actually happening in the first place.
Given the financial motive that appears to be behind the actions of Tom Hancock, the original executive director of GEDSA, it kind of smacks of the idea that he decided he could make a lot of money as a result of the death of a woman he never even met if he used her story for his own financial gain. Nothing about this smells right.
Summarizing my thoughts
And so, if you want the short version of my thoughts on ENFit® , here they are. I think there are people that benefit from using ENFit® . And I won’t tell someone not to use it if they know all of this and find the benefits outweigh the risks in their situation.
However, all of us, whether we use ENFit® or not, need to join together as a unified voice to stand against any suggestion that ENFit® be mandated as the only option for everyone because there are those for whom ENFit® would be more risk than benefit.
It’s also important to see that this entire process was done extremely poorly. It speaks of the lack of value placed on tube-fed individuals. Tube-fed people deserve better than the amount of consideration and respect that they were given in the development of this product.
Their needs weren’t considered when the guy put in charge of the project from the start was someone who had already gravely violated the most basic rights of tube-fed people and shown a complete and total disregard for the health of children.
Their needs weren’t considered when it was seen that there was a legitimate concern as to whether this system would increase risk of infection and this clear fact was completely ignored. To this day, even the toothbrush method of cleaning has not been verified through peer-reviewed research to bring the bacterial load to an acceptable level.
I have heard there is a study coming out showing a toothbrush method does reduce bacterial load to an acceptable level, but that data isn’t available to anyone just yet for review. Are you getting this? We do not know for sure whether it is safe to use ENFit® , and yet it’s being used all over the world.
A proven system of adequate cleaning should have been developed BEFORE ENFit® was released. Not years later. Even if it turns out that this method is perfectly safe, the reality is that the tube-fed community had a system pushed upon them that wasn’t even tested thoroughly for safety.
I will never be ok with someone taking the tragic death of a mother and her baby and twisting it around to result in his own financial gain. ENFit® products do absolutely nothing to address the misconnection that resulted in her death. It is horrifying that her story has been manipulated in the way that it has been.
As a community, we need to demand better. We must insist that these terrible people who are using ill-designed research to promote their products stop being put in charge of anything relevant to the tube-fed community. We must demand proper research be done before products are used on our children and loved ones, treating them like guinea pigs.
Isn’t that what has already happened with enteral formula? Let’s just throw some stuff in a can, do absolutely no valid research on it whatsoever, and have kids fed it for years while they vomit, develop kidney problems, develop diabetes, experience reduced immune function, retain fluids, live with increased inflammation and more…
Enough is enough. The wrong guy was chosen for this in the first place, and it shows. We need people developing products for our tube-fed loved ones that have demonstrated that they actually care about the health of our loved ones rather than seeing our community as a means to line their pockets and nothing more, the health of tubies be damned.
I’m so excited to announce the arrival of my latest book, The Quest: Forest of Realms!
Princess Zia has watched her people suffer in despair for an entire year. They have been enslaved by large, fierce creatures that arrived without warning from the dark and mysterious Forest of Realms. Desperate for the answers she needs to free her people, Princess Zia enters the Forest of Realms. On her heroic journey, Princess Zia discovers other lands and realms far beyond her wildest dreams.
She learns the story of the creatures who have taken over her land, and it runs deeper than she ever imagined. Will she be able to save her people? Written for older children, pre-teens, and the young at heart, The Quest: Forest of Realms is an adventure like no other.
The Quest: Forest of Realms weaves strong, positive messages about whole plant foods into its magnificent adventure. Inside, readers will also find many delicious, kid-friendly recipes that use only whole plant foods.
Additionally, a key character is tube-fed and communicates an important message about blenderized diets and the value of real food for tube-fed people. At just $2.99, this book is available for all to enjoy. Order your copy here!
You can also check out the first chapter of my FREE audio book, The Quest: Realm of Rebels! This book will be a FREE eBook, and every chapter will also be available in audio form for FREE. Listen to chapter 1 here. More chapters will be available in the coming weeks!
Interested in learning more about my books? Check out my page here!
One issue many blenderized diet families face is the fact that modern tube feeding equipment has been entirely designed around formula use. In fact, by their own admission, the new ENFit system was developed with the recommendation in mind that commercial formula be the preferred product to feed through a feeding tube. In other words, when ENFit, the most recently developed system for tube feeding, was being designed, whether a blenderized diet could be fed through the system was never a consideration.
While this post is not about ENFit (I will be writing about ENFit in August), I am bringing this up to demonstrate how little attention the medical device industry is giving to the fact that more and more families are preferring home blenderized diets of real food over enteral formula. Parents are often turning to syringes designed for the feeding and rehabilitation of squirrels, for example, because the syringes designed for feeding food to squirrels are of better quality than the syringes designed for feeding food to children. The medical device industry is not keeping up with the times, that much is clear. And families have endured a lot of frustration because of it.
So, I was extremely pleased to hear of a couple of people experienced in the medical device industry who noticed this and wanted to offer something better to tube-fed patients, especially for those who are feeding pureed food. After working in the medical device industry for many years, Brian Johnson and Fred Reuning both saw the market changing more and more toward blenderized diets and more natural nutrition products. Yet, no new delivery options were being developed with this in mind. Believing in natural nutrition themselves, they knew they could create a delivery system that is better than what is currently available. And that is what they set out to do. They branched out on their own, launched their self-funded company, and developed the bFed System.
Earlier this year, their bFed System was launched. I am IN LOVE. All our frustrating days of dripping food everywhere with syringes can now be a thing of the past. Imagine just packing up pouches filled with your pureed food when you are going out for the day, connecting those pouches directly to the g-tube extension, and feeding. This is now possible, thanks to the bFed System.
One mom mentioned she really liked that she could fit an entire meal into one bag (a bag can hold up to 13 ounces), it was less messy than syringe feeding, and it was easy to clean, much easier than she had anticipated.
Some people have noticed that it was a bit difficult to push the food through the extension, particularly with thicker blends. However, other moms have noticed if you insure all of the air is out of the bag, this problem is alleviated. If you turn the bag upright so the opening is facing up and squeeze the food up to the opening to remove any air prior to connecting it to the extension, pushing food through becomes much easier. Alternatively, hold the bag upright, attach the extension and push all air up and out so only food is in the bag and extension. Then, attach the extension to the feeding tube (much like you would prime the air out of a bag on a feeding pump prior to connecting it).
It seems if there is a lot of air in the bag, you have to push it a lot harder because you are pushing large air bubbles around inside the bag rather than pushing the food directly through the tubing. Still, if you use very thick blends, you may want to try a small sample kit to see if this system is right for you. Some that use very thick blends had a hard time getting the final ounce of food out of the bag. It seems in most cases, however, blends go through just fine, and the response to the bFed System has been largely very positive.
Another solution the bFed system provides is the ability to connect store bought baby food pouches directly to a G-tube extension. Many mothers, myself included, have sought out ways we could simply put a baby food pouch right into an extension, and we have gotten quite creative in the process. Throwing some shelf-stable baby food pouches into the diaper bag when going out for the day can be quite convenient. However, when you then have to squeeze all those pouches into a blender bottle, stir them up, suck it up with a syringe, drip food everywhere while moving the syringe from the blender bottle to the extension, and then, feed, that convenience pretty much goes out the window.
Now, you really can just attach a baby food pouch directly to the extension without tremendous feats of improvisation. The bFed system has an adaptor that allows you to connect a baby food pouch directly into an ENFit extension. Also, if you do not wish to use ENFit, an adapter is available here that allows you to connect it to other extensions as well. Some people like ENFit and other people abhor it. I appreciate that this company offers both options so people can use whichever system they prefer rather than requiring everyone to use one system or the other.
If you use Nourish, Liquid Hope, or Real Food Blends, you can pour the product into a blender bottle with any liquid you would like to add, shake the bottle up to mix, and then pour it right into the bolee bag from the blender bottle for no-mess feeding.
What I am most pleased about with the bFed System is the selection and freedom of choice the company offers (something rarely extended to the tube-fed community), their acknowledgement that better systems are needed for people feeding pureed food through feeding tubes, and their desire and efforts to provide those better systems to the tube-fed community. The first generation of the bFed System was first shipped out in February of this year, and the second generation is already in development.
Their website is filled with pictures of wholesome, nutritious foods rather than sugar-laden beverages, and their slogan in their logo is, “Freedom to Choose.” In this way, they truly stand apart from other companies in the medical device industry.
I have personally spoken with Brian Johnson on multiple occasions, and I do feel he is genuinely interested in hearing consumer feedback so they can develop the best system possible. Home Care Supply companies can supply the bFed System as part of your monthly supply kit (they can bill it under the gravity billing code). You can also buy directly through their website here.
I give a two thumbs up to the bFed System and encourage you to give it a try and to support the efforts of this company to make tube feeding easier for all of us.
*I received no compensation, neither financially or materially, for writing this blog post.