Kate Farms "Plant-Based" "Organic" Tube Feeding Enteral Formulas: Review

I haven't made a post in this blog in over a year because I retired it. I posted everything that I felt I needed to post, however I feel the need to make this public. I don't usually do this- mostly because this has never happened before, but I feel is necessary.

If you've come to this blog, it's mostly because you've searched some variation of "Liquid Hope Review" or "Real Food Blends Review." However, a fair share of you all know me from online support groups for "tubies," or in other words, people with feeding tubes.

Those of you from the feeding tube groups generally know my story already. You know how I have muscular dystrophy and that I will be a tubie for the rest of my life. You know how due to my illness I have a lot of free time and like to spend it helping speak up for tubies who may not be able to communicate themselves. I had a lot of troubles when I first got my feeding tube and went through several years of actually hating it because of formulas that I haven't tolerated, that have had terrible ingredients, and a variety of other issues including not being listened to by my doctors. For this, since I've been a teenager, I have been very active in several Facebook groups.

I share tips of things that have helped me. I've warned of things that may be recommended to parents that actually hurt us tubies (like hydrogen peroxide on granulation tissue), etc. I've been doing this for several years.

I've went through a dozen or so formulas, or rather versions of formulas, over this time-- since I got my tube when I was a preteen. I am now 21. Naturally, there are formulas that I like more and ones that I don't like as much. I have improved so much when switching to real food, and this is what I advocate for as a first choice. Synthetic formulas have helped me stay alive, however a tubie (just like any other person) should be eating real food unless it is not tolerated. That's when synthetic things and last resorts like TPN (IV nutrition) come into play.
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Now, here's the relevant part...

Parents in these groups often ask for advice when looking to try new formulas. Because I've personally tried many of these formulas (Real Food Blends, Liquid Hope, Compleat, etc) I let them know what my experience is of them.

Never have I ever had an experience with a maker of a formula like this. I have never talked to this woman before today, yet the maker of Kate Farms formulas decided that it was okay to talk to me like this. I'll let you see for yourself:

3 weeks ago someone in one of the feeding tube groups I'm in asked about things that they can do to help their baby gain weight. I mentioned a common thing that people do-- add carrier oils like coconut oil to their current formula. This woman's baby was on Nourish. 3 weeks later, today, I received a response on the post from the woman of the name Michelle McArthur Laver. She was accusing me of "working for Nourish" AKA Functional Formularies. I clicked on her page and saw that she had the Kate Farms logo as her profile banner. Usually no one does things like that unless they're affiliated with a brand, so I went to the Kate Farms website and found out that this company was in part started by this woman. I guess she didn't like that I recommended another formula over hers.

I've never been endorsed by anyone (which is why my blog has positive reviews of mine from several different companies), and I am as transparent as possible about my experiences.

I was upset that someone would accuse me of this, so I set her straight: I'm a tubie and have been for a long time. I've been in these groups for several years. I speak up so other babies don't have to suffer what I did. I don't work due to my illness. You can't see the rest of my comment, but it goes on to say that Nourish isn't the only formula that I've ever recommended. I haven't used a formula from the makers of Nourish in well over a year. I'm actually currently using their "rival," Real Food Blends, due to toleration issues. That I don't like being accused of something like this, and I'd love the opportunity to say that I can work. What she said was a slap in the face and just rubbed in more of the fact that I can't work right now.

Usually what someone would do would be apologize, but no... She buckled down.

She continued to accuse me of lying. She accused me of "putting down" her company all over the web. The only place I'm active in the tubie community is in this closed (private) Facebook group-- so no, I'm not doing anything "all over the web," and I've never once put down her company. What I have shared is my experience with her Peptide Plus 1.5 formula that my doctor had me try before she refill an old prescription. On this formula, I did amazing on the first day or so. When I woke up I was delighted to have not felt any stomach pain or anything. Even though I knew I did not want to switch to this new formula, and wanted to continue with my old formula that I've been on for a while now, I was happy to be able to tell parents that this Kate Farms formula wasn't in the same batch of formulas that made my stomach hurt within 15 minutes. I continued my trial of this Peptide Plus 1.5 formula however on day 2 I did not feel as good, and by day 3 I had extreme diarrhea among other symptoms. In short, this would no longer be something that I'd personally recommend from my own experience. I let my doctor know this information and she quickly got me back on my old formula. I shared this experience with parents, and little did I know, people were watching.

I did not respond to this. I wasn't going to blatantly disrespect someone and I knew that nothing I would've said would be nice, so I said nothing at all. She continued to comment...

She continued to accuse me of lying about my situation. She gave me a sarcastic "God bless you for your condition," full of pity and a "We hope you find wellness with your choices." What does that even mean? "For your condition." "Your choices."

This Carole that she speaks of is Carole Baker. Carole is openly affiliated with Functional Formularies and does not deny it. Many creators and people affiliated with formulas are in these groups, including the creator of Real Food Blends. They do not deny it.

Carole knows who I am because she saw me struggle for half a year trying to get coverage so I could try the adult version of Nourish. I have never met her nor am I friends with her on Facebook. I've never talked to her out of a group.

In all of my several years of recommending formulas over each other I have never had a creator of a company speak to me like this. It may seem silly but I got so mad I almost cried. Because that's how seriously I take this. I never want a kid to feel like I felt. I never want them to hate their tube or hate their life or feel trapped or any of those things. And Michelle threw that in my face. I don't appreciate her judging me like this. My efforts to help young tubies and their parents aren't evil nor do they come from any place that could even be considered badly. Luckily I had many people come to my defense and remind me of how much I've helped them, and why I do what I do, so I let those feelings go.

The most insulting thing about this is that someone alarmed me that she was/is in this group under multiple accounts, and was giving people reviews of Kate Farms formulas as if she wasn't affiliated with the company. As if she wasn't one of the creators.

These are just a few of the comments that I found from a year ago (from this second account):

I know that someone's going to say "Well, technically it did work for her daughter if her daughter is using it, right? So that wasn't a lie." And that is very much true. I don't even doubt that the intentions were good. But let's be real-- How many people in a parent support group research the other parents who are there to give support to them? How many people in a group like this are going to suspect that the person commenting is trying to sell them their own product?

And this woman has the audacity to try and tell me I'm not being authentic. To try and tell me about sincerity. All because I told the truth about my experiences with one of her products in a private Facebook group. Of all of the other formulas that I've communicated similar experiences with, I've never had a maker of them do this. When you're thinking about trying a formula from this brand, know that if you don't have a good experience with it and even dare let someone else know, you might get a few nasty comments like I've gotten. 

When I tried the formula and didn't tolerate it, I never planned on making a blog about it (as the only blogs I have here are positive ones), however after this person having sought me out to send me these messages, I thought I would make this public. I don't expect anything from this woman. I blocked all accounts that I know of from hers, and an apology isn't necessary. Just know I won't be silenced.


Court Ro

Should Your Tubie Wear That Swimsuit?

This post was inspired by someone's post that I saw on Facebook, but more importantly it reminded me that it's something a LOT of tubie families deal with. Parents themselves may be more cautious on what their tubie should wear because they aren't sure how to approach the issue. They may not know whether to think of their comfort or a stranger's comfort when seeing a medical device that they've never seen before. 

(Extended) Family and friends can bring a whole new dynamic to this issue. They're less likely to understand the significance of the tube and don't want the tubie to look anything different than their idea of "normal." They believe the tube is something private. Something to cover up, and something that others simply "don't need to know" about. 

I'm here to tell you why they're wrong. Simply put: 

Feeding tubes help us eat. They help us get nutrition so we can grow and stay alive just like with any other person who gets all of their nutrition orally. 

Swimming in pools and at beaches is completely okay and supported by not only tube manufacturers but also doctors. Not only is it plain out fun but it can be therapeutic, too!   

It's not gross, unsightly or unhygienic. If a piece of life-saving silicone that is smaller than an inch (let alone any size tube) effects someone that much that they'll ask that person to cover up, or think that they as a person are less beautiful because they're unapologetic about it... I think they might be a different problem! To make it a little easier, I made this fun chart: 

To tubie parents who are nervous about the swim season: 

Know that whether or not you choose to cover up your tubie's tube, all options are okay! Sometimes one pieces are so much cuter than two pieces. And sometimes trunks with a shirt or a wetsuit look more awesome when compared to only trunks! Maybe you want to cover up the tube with tape or Tegaderm to keep the sand from getting onto the stoma... That's fine. Maybe you'll cover it up so your tubie will be less self-conscious. That's okay, too. All suits are okay. But let it be your (or simply your tubie's if they're old enough) decision! Not from the false idea that tubies are less than or weirder than because of that tiny piece of silicone. 

Rock on, parents! 



Court Ro 

Who am I? Why did I switch formulas?

Hi! I go by the name of "Ro," for short. I'm a teenager who has a rare form of muscular dystrophy. Some of the muscles that it affects the most are the muscles that I need to eat, so naturally, I became a "tubie" in 2009. (I've had one ever since, and will for the rest of my life.) When I first got my feeding tube (g-tube) I was able to tolerate the standard (and horrible) formulas that they give just-about everyone. I had no diagnosed gastrointestinal problems, and did not see a GI doctor. Over the years I began to have problems, eventually being diagnosed with delayed gastric emptying and poor weight gain / failure to thrive (in adult). 

It's safe to say that I've always been particularly thin my entire life, but as my muscles have gotten weaker, and when I get sick - it's now easier for me to stay sick longer, not eating when I was sick just wasn't going to cut it anymore. I needed to have a way of nutrition during all times. The feeding tube surgery was great... I thought it was going to hurt. And I mean hurt - a lot. The recovery process was the part that hurt the most, and part of it was from it being flat out annoying. If you go too long without cleaning the stoma area or moving your (g-tube) at first, granulation tissue can form and it's horrible to get off. But that's enough about why I have a tube. 

I made this post to show a list of ingredients that are in the (latest) formula, Peptamen Jr. 1.5, that I used before I switched over to Real Food Blends. I've highlighted only a few of the ingredients that should catch your eye. These are ingredients that are in many of the top commercial formulas out there.    

Ingredients in (unflavored) Peptamen Jr. 1.5:

Water, Maltodextrin, Enzymatically Hydrolyzed Whey Protein (From Milk), Medium Chain Triglycerides (From Coconut and/or Palm Kernel Oil) and less than 2% of Cornstarch, Soybean Oil, Canola Oil,Fructooligosaccharides (Soluble Fiber), Calcium Phosphate, Soy Lecithin, Tuna Oil (EPA & DHA Source), Inulin (Soluble Fiber From Chicory), Potassium Chloride, Magnesium Chloride, Sodium Phosphate,Guar Gum, Potassium Citrate, Sodium Ascorbate, Choline Chloride, Salt, Taurine, Alpha-Tocopheryl Acetate, Magnesium Oxide, Inositol, Ferrous Sulfate, L-Carnitine, Zinc Sulfate, Calcium Pantothenate,Niacinamide, Vitamin A Palmitate, Vitamin D3, Phytonadione, Manganese Sulfate, Thiamine Mononitrate, Citric Acid, Pyridoxine Hydrochloride, Riboflavin, Copper Sulfate, Beta Carotene, Folic Acid, Biotin, Potassium Iodide, Chromium Chloride, Vitamin B12, Sodium Selenate.

Here are reported symptoms from these ingredients:

Maltodextrin - Can cause allergic reactions, bloating, AND flatulence (farting).

Soy Lecithin - Common side effects include: nausea, stomach pain, bloating, diarrhea, and skin rashes.

Potassium Chloride - The most common side effects are: diarrhea, gas, stomach discomfort & vomiting.

Magnesium Chloride - Can cause diarrhea.

Potassium Citrate - Possible side effects: abdominal or stomach pain, diarrhea, nausea, vomiting.

Salt - Can cause high blood pressure, kidney problems, and more.

Magnesium Oxide - Common side effect: diarrhea.

L-Carnitine - Somewhat common side effects: stomach cramps, diarrhea, headache, nausea & vomiting.

Zinc Sulfate - Nausea, vomiting.

Folic Acid - RARE but side effects that have been reported are: nausea, flatulence (farting). 

Potassium Iodide - LONG-TERM effects may include: confusion, severe headaches, unusual tiredness, weakness/heaviness of legs.

 These are ingredients that are in many of the top commercial formulas out there.    

Guess what the most common symptoms that I had were when I was on Peptamen Jr. 1.5? I had bloating, flatulence (farting), stomach pain, occasional diarrhea, occasional vomiting, and occasional nausea. ALL of these symptoms stopped when I switched formulas.

♥

(And just for fun's sake, I thought I'd leave the ingredients of Real Food Blends below. Notice something different?)

Orange, Chicken & Barley - Chicken, Barley, Carrots, Water, Orange Juice Concentrate, Ginger, Grape seed oil and sunflower seeds.

Quinoa, Kale & Hemp - Water, Kale, Grape Juice Concentrate, Hemp Powder, Extra Virgin Olive Oil, Quinoa & Cinnamon.

Salmon, Oats & Squash - Water, Squash Puree, Salmon, Pomegranate Juice Concentrate, Rolled Oats and Flaxseed Oil.

Real Food Blends: Review

Prelude: First, I'd like to say that this review was originally written several weeks ago (to Julie Bombacino, the woman behind RFBs) but I thought "why not make a blog for this?" so I've posted it here. I see so many kids who have improved from Real Food Blends but are unable to tell their parents and/or caregivers just how much of a difference real food makes, so here it is... This post is a review of the three main blends/"formulas" from Real Food Blends.  

Review:

I just have to say, I'm beginning to really love Real Food Blends! I just recently had a month-long hospital stay and surprised just about every nurse that I had (almost 56 of them!) with my Real Food Blends. They looked at each one in amazement, and even had fun asking me which pack I wanted at my various feed times. Something that I would've never been asked if I had other formulas.

During my stay, I got transferred from the ICU to the Pulmonary floor/unit. Surprisingly, about 90% of the kids on that floor have a feeding tube, along with their respiratory issues. And not surprisingly, I was the only one who used blended foods -- Real Food Blends! On certain days I was bombarded with questions about how I found RFBs, what formulas I previously used, and what happened when I switched formulas.

When I was admitted into the hospital, I weighed 69lbs. When I left, I was 74lbs. On commercial formulas I could manage to lose many, many pounds in a month. (Once I even lost 10 pounds at a six-week doctors visit!) Rarely have I ever gained 5 pounds in a month. I hope that by my next doctor appointment that I gain another 5.

I'm the first, and only, patient in my doctor's Neurology department that has ever tried Real Food Blends. My doctor and nutritionist were unsure that I would be able to fully tolerate and digest RFBs. In fact, my nutritionist flat out told me that she didn't think I would be able to. I cannot wait to tell them how awesome that it is! I can't wait to tell all of my friends with similar conditions to try it.

Oh, and another thing... Poop. (I didn't want to mention it, but I kind of had to!) Bowel movements are NO problem with RFBs. The first few times I that I first tried a single blend pack -- I'd have to have a bowel movement immediately after I finished one! No constipation. No loose bowels. No pain. No offensive smells (haha). I wasn't sure that I could have it all, but apparently I can!  

To Julie: Thank you so much for using your son's inspiration and going through with creating RFBs. I used to take many medicines for my gastrointestinal problems -- hardly helping, if at all. I used to have diarrhea, bloating, and general stomach pain when using commercial formulas. Hopping from formula to formula, I am SO happy that I discovered RFBs! My doctor may have been unsure about the switch - but I am so sure that it's all been going well. I can't thank you enough! I am ecstatic!

Side-note: Yes, I know. It looks like I was paid to do this, but I promise that I wasn't. I'm your average teen who has been using a feeding tube since 2009. I'm just your really enthusiastic teen! The fact that for once I stopped experiencing stomach pain -- that the only thing that I experience with these packets is a full stomach, drives me crazy every time I use it. And yes, I still enjoy picking which packets I want to use. (The quinoa one is my favorite! The salmon one goes super easy on the stomach, too!)

For those of you who have wanted to try RFBs but are unsure of if insurance will cover it -- please try. I was immediately covered for Real Food Blends with Cigna (TX) insurance. And the cool thing is that I'm pretty sure that my second (Medicaid) insurance might've covered it, too. I'm a happy camper, and you all should be, too.

If any of you have questions about my experience with Real Food Blends, please send me an email at:

projectcode18@gmail.com

(or check out my blog comparing my old formula to Real Food Blends by clicking HERE.)

If you have any questions about insurance coverage, the HCPCS billing code for Real Food Blends is: B4149. Call your insurance(s) and ask if that code is a covered benefit!