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...  

____________________________________________________________

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. 

___________________________________________________________

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. 

___________________________________________________________

  

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.

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!