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 

Tubie or Not Tubie?

This is what happens when you get reunited with your favorite computer programs and you read too much Shakespeare... 

Last night during the terrible storms in my area I started brainstorming about different "tubie" sayings that I could print out as decals and this is one that I came up with. Slightly punny, slightly not. A lot of other people are getting a kick out of it though, so I thought I'd share! 

(Sorry if you expected a real blog, haha.)  

Court Ro  

How To Calculate [Bolus] Tube Feed Rate: Cheat Sheet

UPDATE 3/3/2022: If you use an Android phone, I've created an app that calculates tube feed rate that you can download now! Check out Simple Flow App HERE. 

Following up from yesterday's post... Here's a quick cheat sheet for bolus feeds:

See you next time.

Disclaimer: On "35, 45, and 55" the multiplier numbers were simplified, so the outcome may round to 1 mL of a difference than if you were to use the non-simplified formula that I provided on the other post. I just thought that I should make this known just in case people compare, haha.

- Court Ro

How To Calculate Feeding Tube Feed Rate

How To Calculate Tube Feed Rate:

UPDATE 3/3/2022: If you use an Android phone, I've created an app that calculates tube feed rate that you can download now! Check out Simple Flow App HERE.  

Hi everyone! A few days ago I finally got Photoshop back on my computer. It's been quite a while and since it's a new version I have to re-learn everything that I've learnt. I thought this would be a nice time to get back into the groove of things and try things that I (thought I) remembered. I made these sheets that show you how to calculate your tube feeds. They are 8.5 inches by 11 inches... The size of standard printer paper. If you'd like to print these out and keep them for reference, feel free to. (That's actually why the top photo has a left border... So you can hole punch it.) I hope this comes in handy for someone. 

  

Well, I better get back to my work. See you later. 

Court Ro 

Liquid Hope: Review

(and the differences between it and Real Food Blends)  

First, I'd like to say that though I still love and appreciate Real Food Blends, I switched blends for a variety of reasons. I got my first shipment of Liquid Hope on January 11th, so I've been on it for a little bit over two weeks' time now.

I'd also like to tell you a little bit about Liquid Hope and how it compares to Real Food Blends here:

Liquid Hope is a blended formula, just like Real Food Blends. They are the only two major food-based formulas made for enteral feeds (feeding tubes) that are also covered by many insurances (including Medicaid and Medicare). Call your insurance to ask if they cover HCPCS code B4149. (Both companies' blends are under that code.)

Unlike Liquid Hope, Real Food Blends has three different blends. (Edit: As of 11/02/17, they have 5 blends.) These blends are meant to be used as 'meals,' so they do not offer a complete nutrition. This is not a problem for many people like me since we eat some orally, but this may be a problem for people who want to use them as sole nutrition. They may have to take extra vitamins or add certain foods to the blends. 

Liquid Hope only has one formula- but that is because that's all they need. The blend offers a complete nutrition.

Real Food Blends has 1.0kcals per mL at 330 calories per each 9.4oz blend while Liquid Hope offers 1.3kcals per mL at 450 calories for its blend. For people like me, the higher calorie, the better, so this was one of the reasons that I switched.

Real Food Blends' meals are meant to be bolus fed via syringe. They are, in my opinion, hard to use via both the Joey and Infinity pumps, but it is not impossible (as my first review says).

Real Food Blends' meals are not organic, and do have fish and chicken in some of them. (Edit: As of 12/23/2016 they also have beef in one of the packets.) They say that none of their meals "contain any raw ingredients with gluten" though they are produced in a facility that uses gluten. 

Liquid Hope is dairy-free, soy-free, corn-free, and is also gluten-free - though it is produced in a facility that uses gluten.

Though both formulas are free from many allergens, Liquid Hope does contain almonds. (Some individuals with nut allergies have been able to use it, but you should consult a doctor before trying it.)

When Liquid Hope was first developed, it was vegan. They used vitamin D2, but after a formula change, they now use vitamin D3 instead. Since vitamin D3 comes from the lanolin of sheep and/or fish, this is why it cannot be classified as vegan. While knowing this won't make a difference in most feeding tube users' lives, for ones who were vegan or vegetarian before they got their tubes or would like to reduce their carbon footprint, I thought I should mention it.

Remembering how I had to add more liquid to my Real Food Blends meals to use them with an Infinity pump (and how 2/3rds of them failed my Kangaroo Joey "test"), I was delightfully surprised when I found out that I could put a packet of Liquid Hope, straight, through my Infinity pump. (I've heard that you do have to dilute it some to be able to go through the Infinity pump).

As Real Food Blends does not offer complete nutrition, they have been used by many people who range from toddler age to adults. They are meant to have things added to them, so an "overload" of certain nutrition properties is unlikely to occur. 

Because Liquid Hope is formulated to offer full nutrition and has many of the vitamins and minerals that adults need, many younger kids have trouble getting doctors and nutritionists to agree to using it instead of other commercial formulas. This will vary from doctor to doctor. Many parents have been able to get it prescribed for their toddlers. (Some doctors will even compromise and let you give them Liquid Hope for a portion of their nutrition instead of 100% of it.) The great thing about this is that Functional Formularies, the makers of Liquid Hope, has recently announced that their new pediatric formula, Nourish, will be in production during the next two months. (Edit: As of 12/23/2016, Nourish is currently in production.) The pediatric formula is nut-free, though still used in a facility that works with them.

As you can see, the blends from these companies are each made and compatible with many different lifestyles, so your choice may be dependent on many of these factors. 

Let's get to my, albeit short, review.

Review:

Me getting Liquid Hope wasn't exactly as magical as it was when I got Real Food Blends because- and this is good- I am not in the hospital! (Read about how I amazed 56 nurses with RFBs). I've told my small circle about it, but in the end of course the most excited person was me. 

Pretty much everything that has happened with Real Food Blends has continued when I returned from my brief stint with Compleat to the awaited Liquid Hope. I feel amazing. 

Despite being an adult (and Liquid Hope being perfect for me), getting my doctor to prescribe it was a LOT harder than it was getting them to agree to me getting Real Food Blends, but I got it done. I now have BlueCross BlueShield TX which denied my doctor's order for Liquid Hope. (Technically they covered it then turned around and denied it... Long story!) My secondary, Traditional TX Medicaid, as I expected it to, covered it immediately.

My doctor didn't think that I would be able to tolerate Liquid Hope. She said that if I did not at least double my water intake that I would be severely constipated. While I agree that I need to drink a little bit more water, haha, I am happy to report that I am not anywhere near constipated. My poop is relatively comparable to Real Food Blends... A little looser. It's definitely not diarrhea-level loose but I would prefer for them to be a little bit more formed. While for the first week or so I would have to poop almost immediately after every packet of Real Food Blends, I did not have this problem with Liquid Hope. (It wasn't really much of a problem since everything became regular with RFBs, but I thought I would mention it. If you or your kiddo poops differently during the transition, it's normal.) 

For whatever reason, I feel more full when using Real Food Blends' packets (though they have less volume). They both sit very well on my stomach but while I found myself being full after two [9.4 oz] RFBs packets, I could still eat a snack with two [twelve oz] LH packets. This is good for me since eating orally is how I get a good chunk of my nutrition. I'm encouraged to eat as much as I can.

The no pain, no loose bowels, and no stomach pain stays true for LH. 

This might be too soon to tell, but I took the time out to feel my (hyperkeratosis pilaris and eczema-ridden) skin and it feels so much softer than it usually does. I haven't put lotion on in days and the water here is brutal... This could just be a coincidence, but maybe it isn't. 

I'm not sure of any weight chances as I don't have a scale nearby but I have an appointment with GI soon and can't wait to see the gain! (I've claimed it!) (Edit: As of 12/23/2016 I have maintained my weight. I no longer have to see my GI doctor every six weeks, and have maintained my 84-86 pound range. Gaining is no longer my goal.) I also can't wait to shove it in their faces [just a lliiiittle bit] on how well I've done on it and how they need to put some of their other patients on it. I can't wait to pass out samples of LH just like I did with RFBs.  

I am so grateful that I've found a formula that I can use with my Infinity pump without having to add liquids and increase the volume of it. Even more grateful that it's higher calorie, and that the amazing team behind it pays so much attention to detail for the people who get to enjoy it. I'll be honest. The things that I eat orally aren't even up to the bar that Functional Formularies has set. 

I mean, look at these ingredients!

I never thought that I would be able to tell people that the majority of my diet was plant-based, organic / non-GMO, dairy-free, gluten-free, soy-free, and corn-free. It's like I almost fit in with the hippie vegans at Whole Foods, haha! ;) 

No, but seriously...  

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To Robin, CEO of Functional Formularies: Thank you so much for taking what you've been through with your father and giving him the best nutrition possible. Thank you for taking all of that energy and never stopping by creating another great blend that so many of the tube community can enjoy. 

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Both Robin of Functional Formularies (Liquid Hope / Nourish) and Julie of Real Food Blends are moving mountains in the feeding tube community. They've put their blood, sweat & tears into it for the past several years and are continuously working to improve in both the perception that the rest of the medical community has on blended diets but also by making more blends for us to enjoy. Though Liquid Hope is my final choice, I appreciate the efforts of both and will support them to the end. 

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If any of you have questions about my experience with Liquid Hope, 

please send me an email at:

projectcode18@gmail.com.

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.