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
