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Homemade Blenderized Formula for G-Tube

28 Dec

*Update: I just got a call from our dietician from the GI team telling me she reviewed my recipe and Jenna’s stats over the last month and was thoroughly impressed.  She said my nutritional content almost EXACTLY matches what she was getting with Boost 1.5 and that Jenna’s doing great.  I swear the GI team totally thought I wouldn’t be able to do this, that Jenna would lose weight and that we’d be back on formula within a month.  I love surprising them. 🙂

We decided to make a big switch in Jenna’s feeding routine.  We’re moving toward all organic, homemade blenderized feeds instead of pre-packaged formula.  We did NOT make this decision lightly.  I did a ton of reading and researching, and we, of course, talked to our GI specialist and nutritional team.  There is no doubt that this change requires much more time, attention and diligence on my part.  I would have loved to do this long ago, but, quite frankly, I know without a doubt that I wouldn’t have been able to manage it well earlier in Jenna’s care.  Her weight issues were very serious, and added to her other medical concerns and requirements, I don’t think I would have had enough time or energy to focus on this as required.  I’m telling you this to make sure that you understand that I’m not in ANY WAY saying that this is what everyone should do.  Every situation is different, and only you and your medical team can determine what’s best for your family and your kiddo at this point in your journey.

Our main reasons for deciding to make the switch were based on health and environmental concerns.  We’re hoping it also equates into some financial savings.  Health wise, we wanted to get away from her pre-packaged formulas that were primarily corn and soy based, due to our concerns with heavy pesticide use and genetically modified crops.  (Watching the movie King Corn served as somewhat of a catalyst here).  Additionally, the health benefits of whole, organic foods over pre-packaged, processed foods are pretty much undisputed.  There are some theories supporting the idea that using whole, “real” foods also encourages eating behavior and helps the child transition from tube feeds to oral.  As the food is prepared, the child smells and sees the food and can even help with the preparation.  As the child digests the whole, blended foods, they burp and experience the tastes and flavors of the foods, increasing curiosity in a variety of foods (a little gross – I know – but that’s the way it is).  We’re willing to give it a try!

Our environmental concerns largely centered on the phenomenal amount of waste we were producing daily with formula boxes and feeding bags.  Once we make a complete switch, we will only require a few 60 mL syringes and extension tubes for bolus feedings and administering medicine.  We’re fairly certain that even with buying all organic ingredients, we’ll see significant cost savings by eliminating these costly supplies.  Formula and feeding bags alone cost approximately $2400/month!!  Eeeep!  Finally, making this switch will enable us to move away from reliance on a feeding pump (and the electricity it uses) and the need to take it with us everywhere along with its backpack.

In preparing for this change, two of the first things I did were to purchase a book called Homemade Blended Formula Handbook (HBFH), and a Vitamix blender (pictured above).  The cookbook is an invaluable resource full of nutritional information/requirements & recipes, and I cannot say enough good things about my Vitamix blender!!  I did a LOT of searching, and that book is the only one like it that I could find out there.  If you know of any others, please let me know!  Our GI specialist didn’t even know of any others available.

Through the Oley Foundation, I learned that special pricing is sometimes available for those requiring a Vitamix blender for medical reasons such as primary feeding.  I contacted Frank at the Vitamix corporation, and he was a joy to work with.  As soon as we provided a doctor”s statement of medical necessity to him, he got the ball rolling.  His service was quick and professional.  We received a significant discount on a refurbished unit that includes a full 7-year warranty and a wonderful book of recipes and usage tips.

Once we were set up for action and our GI team approved our switch, I started putting together a base recipe using existing ideas in the HBFH and organic ingredients that I knew I would have access to.  Here’s the base recipe that I came up with: *

2 cups chicken broth (I use free range/low sodium)

1 cup sprouted quinoa

1 T olive oil

ginger

cinnamon

1/2 cup applesauce

4 T almond butter

1/2 cup powdered goat’s milk

1 cup goat’s milk kefir (see link for benefits)

1 T hemp butter (see link for benefits)

1 large egg hard boiled (Again – free range)

1 large banana

1 T Udo’s 3-6-9 Oil (Click here for benefits/why)

1.5 cups water (or more – depending on desired thickness)

Cook quinoa according to package directions with chicken broth (instead of water), olive oil, ginger, and cinnamon.  Ginger aids and soothes the digestive track and decreases inflammation (see the highlighted link for more information).  I use fresh when I have it, and dried/ground if not.  Cinnamon is a great source of manganese, fiber, iron, and calcium, boosts the immune system, may help decrease inflammation & joint pain, and has antifungal, antibacterial, antiviral, anti-parasitic and antiseptic properties (see the highlighted link above, or try this one for more information)!!  Wow!  I’m generous with both the ginger and cinnamon- add what you’d like.

While the quinoa is cooking, I add all the other ingredients to the VitaMix.

When the quinoa is done cooking, I simply pour it into the VitaMix with all the other ingredients and blend!  Start to finish, the entire process takes me about 20 minutes.

This recipe yields approximately nine 150mL servings.  Each serving has:

206 calories

11 g fat

7.3 g protein

I find all of the ingredients at our local co-op.  If you don’t have this wonderful luxury, try health food stores or online shopping.  Many of them can probably be found at a standard grocery store.

We flush her extension tube with 30mL water before starting and 30-60mL when finished.  We also supplement with Poly-Vi-Sol and D-Vi-Sol daily, and recently added Miralax to help with bowel regularity.

When I first made this, I used cow’s milk (powdered and whole) and Jenna complained of a tummy ache after every feed.  I switched to goat’s milk and she hasn’t complained since.  If your kiddo tolerates cow’s milk, that would obviously be easier to find.  Now that I’ve determined that Jenna tolerates this formula with no problems, I plan to use it as a “base” and tweak it by adding other ingredients or flavors.  I’ve already tried adding blueberries to the mix, and the possibilities are endless.  I’m thinking spinach, kale, pears, strawberries, beans, broccoli, etc.

You could substitute the water with fortified soy milk, almond milk, etc. to add more calories/protein/fat, but you need to make sure that your child is getting enough additional water throughout the day to meet their hydration requirements.

When we started this switchover process, Jenna was receiving three pump feedings – one in the morning, one during her nap, and one (the largest) overnight.  Our first step was to replace just the morning feeding.  We carefully watched for any signs of discomfort or allergic reaction.  Due the timing of the holiday season when we started, we ended up prolonging this stage for almost a month.  We then switched both of her daytime feedings to homemade, blended foods.  We’ve been doing this for almost two weeks now.  During this process, Jenna maintained her weight with no vomiting.  She hasn’t gained weight yet, but that always takes her some time.  It’s also notable that for two and a half weeks, she had a respiratory virus, and she’s previously always LOST weight when she is sick in any way.  Maintaining her weight throughout her sickness is a wonderful sign.

For the formula feeds that we’re still giving her (now, only overnight), we switched to an organic formula option, called PediaSmart.  PediaSmart is free of lactose, gluten and corn and contains no genetically modified ingredients.  Jenna made this transition with no problems.  Once we’ve made the transition to all homemade, blended foods (hopefully with no overnight feedings), we still plan to keep some of the organic formula on hand for times when homemade, blended feeds are inconvenient or impossible, such as when we travel and refrigeration isn’t available, or in case of power outage.

I’ll keep you posted with our progress, any new recipes I find that work, and hopefully, more precise calculations of our cost savings.

Please let me know in the comments if you have additional ideas, experiences, or your own recipes or sources!  I always love hearing from you.

Other resources for blenderized formula, tube feeding, and pediatric nutrition:

Ainsley Rae

Praying for Parker

Gaining & Growing

Lucy’s Real Food for the Tube

Oley Foundation Discussion Forum

Contemporary Nutrition Support Practice: A Clinical Guide

Handbook of Pediatric Nutrition

*As always, this information is not intended to replace you doctor’s recommendations.  I’m simply sharing our own experiences.  Always check with your doctor before making any changes with diet or scheduled feedings.

 

48 responses to “Homemade Blenderized Formula for G-Tube

  1. punkinmama

    December 28, 2010 at 11:44 pm

    You are amazing!

    Keeping my fingers crossed that J gains weight!

     
  2. psychmamma

    December 28, 2010 at 11:59 pm

    Punkinmama –

    Thanks so much, sweets! I always cringe a little bit when people respond to my care of Jenna with comments like “you’re amazing” because I truly feel like I do what I have to do, a day at a time, just like most parents out there. Even if your kiddo doesn’t have special medical needs, odds are that there is some challenge (discipline, learning, eating, etc.) that most parents face. We just do what we need to do and work for what’s best for our kids.

    All good wishes for progress and success are ALWAYS accepted. 🙂

    Thanks again!

     
  3. Heather

    December 29, 2010 at 5:17 pm

    I “get” it now. Bolus feeds is what you’re doing. I was thinking you were going to somehow manage to continuous feed with no real supplies. Of course, I don’t sleep much…
    😉

    This is really interesting. I’m going to get the book and read, but I’m really not sure I’m to a good enough place to start this just yet.

    How often is she fed? What will that be like at school? (does she start in the fall? I’m always bad with how old kids are when they start school…)

    OK. that’s my ramble

    Smooch! Kiss the VitaMix for me!

     
  4. psychmamma

    December 29, 2010 at 6:27 pm

    Heather –

    You crack me up. She’s currently on the same feed schedule – we do one homemade bolus in the a.m. and one in the afternoon. She’s still getting her big, continuous feed overnight right now. When we completely switch over, I think we’ll shoot for 5 feeds throughout the day so she doesn’t have to have any overnight. If I can get the calorie/protein/fat content up enough (at a tolerable level for her), we could do less feeds and move more toward “breakfast/lunch/supper” type of schedule. With all the reading I’ve done, however, it sounds like kids with short gut tolerate 5-6 smaller feeds throughout the day the best.

    As far as school, that might be an entire post for another day. Short version: I’m really leaning toward homeschooling Montessori-style. Hubs is not. We’re in negotiations. 🙂

    As for how we manage feeds if she DOES end up going to school, I guess we’ll have to cross that bridge when we get there. She’ll be five in January, so she could start in the fall. Right now, we’re thinking she might attend the same Montessori school she did this year on the same shortened schedule (avoiding cold/flu season). Our only Montessori school option only goes up through kindergarten, though, so we’ll have to decide what to do after that.

    You definitely need to feel ready to jump into this. You’ll know if the time is right for you or not.

    VitaMix kissed! 😉

     
  5. Tammy and Parker

    January 3, 2011 at 5:04 am

    Have you been making your own goat’s milk kefir? I have some kefir grains I could send you if you like. 🙂

    We have the same issues with cow’s milk. Which lets me know that the cow milk based formula Parker was on was about as removed from actual cow milk as possible. 😛

    I’ve been purchasing a can of powered goat’s milk each month in order to have a supply on hand just in case.

    Yea! for everything going so well!

     
  6. psychmamma

    January 6, 2011 at 11:50 pm

    Tammy –

    I haven’t been making kefir and have no idea how! I’d love to learn, though, so if you have some grains you’d be willing to share, along with any tips, I’ll gladly accept! Thanks so much!

     
  7. Rose-Marie

    February 16, 2011 at 8:55 am

    Good for you to take the plunge! It sounds like things are off to a great start and I’m sure you will continue to see good progress. Congrats on making it through a respiratory bug without any weight loss–wahoo!! The weight gain will surely come…

    Even without all the specialty health foods you list for Jenna’s blend, feeding good fresh farm cookin’ can do wonders for health! It’s SO worth that little bit of extra time. For us, it costs a fair bit more than the formula provided by Medicaid (no charge to us there, but ewwww! who wants to eat a chemical concoction???), so homegrown veggies, pasture-raised eggs, and possibly our own chicken meat (if we can bring ourselves to butcher when the time comes) help out a lot.

    I encourage you to go for all the fruits and veggies you are dreaming about…if there is no medical reason not to, then there is no reason whatsoever not to!

     
  8. PsychMamma

    February 17, 2011 at 12:23 am

    Rose-Marie –

    Thanks for the encouragement and support! So glad that we connected through your blog!

     
  9. Shelley

    May 4, 2011 at 6:49 pm

    That’s for writing this! My little guy Henry was born with low-tone (unknown cause still) and is entirely g-tube fed. I’ve got the same book and blender (spoke with Frank too!), and have been experimenting with blending single items so far. I’ve made an initial batch of formula of what I think he will tolerate, but haven’t given him a whole feed of it yet. Did you introduce foods one at a time, or switch the whole feed to homemade at one time? If I may ask… how much volume is in each of her feeds? Henry can only tolerate 150mls at a time and we do that 6X per day (5 daytime, once overnight).
    I’m getting zero support from our dietician, but our pediatrician is open to it, although readily admits he currently knows little and needs to do more research. Any advice you have in getting started would be great!
    Thanks, Shelley

     
  10. PsychMamma

    May 7, 2011 at 11:30 am

    Shelley –

    Jenna is 5, and she does try some foods (tiny bites) by mouth, so we had some idea about what she tolerated and that she didn’t have serious food allergies. With the blended formula, we didn’t introduce one food at a time, but simply made a big batch (week supply) of one formula recipe and watched for any reactions or intolerance. I DID notice that she complained of her stomach feeling upset after each feed that included cow’s milk, so we switched to organic goat milk and had no difficulty. There are lists available online of foods that tend to be more allergenic. If Jenna would have been younger when we started the blenderized formula, I would have introduced these one at a time. If you suspect a reaction or intolerance, you can easily eliminate that food from the mixture, try feeding again, and see if it’s tolerated. You can eliminate ingredients one at a time until you determine which one is causing the problem.

    Jenna get 2 daily bolus feeds of homemade formula during the day of 150mL – one via syringe and one via pump (during her nap). We’re currently feeding organic formula (PediaSmart) overnight in her pump at a slow, continuous rate of 80mL/hr for 460mL total. This week, we hope to switch to homemade formula in her pump overnight. We would love to get away from pump feeding to eliminate all the waste (and cost) from feeding bag sets (and electricity for the pump). We might try giving 150mL via syringe right before bed, 150mL via syringe while she’s sleeping, and 150mL as soon as she wakes in the morning.

    If you have more questions about anything, feel free to contact me at psychmamma1@gmail.com

     
  11. Shelley

    May 7, 2011 at 11:09 pm

    Thanks!
    I was so encouraged by his dr’s support and what I’d learned online that I have tried using my homemade formula for Henry’s lunch for the last 4 days and… success! I decided that since he had either “tasted” all the foods in the formula by mouth or through his tube individually, I would try the full formula. I watered it down more than I should have, and started with a smaller amount – but he seems to be tolerating it well. Tomorrow I’m going to mix another batch and try to get it to his normal 24 cal/ounce (he can’t tolerate any higher calorie density right now). Then I’ll keep experimenting with his lunch. I figure one meal a day is a good place to start, then I’ll build up to more.
    Thanks so much for your blog and advice – online advice has been invaluable to me in getting starting!
    Cheers, Shelley

     
  12. sarah

    May 12, 2011 at 6:45 pm

    This sight is amazing and I’m glad that there are other people that think like my mother who is taking care of my son who is g- tube fed. Her concern with this formula is that it would clog up in the tubing. Has this happened to you. Thanks so much for posting this info!

     
  13. PsychMamma

    May 12, 2011 at 8:10 pm

    Sarah –

    I’ve come to realize that it’s just not an exact science. I haven’t had any trouble with the tube clogging, but I blend until I’m certain there are no lumps left, and I know about the consistency it needs to be to pass through the tube. If my blended mixture comes out too thick (or sometimes it thickens as it stands/cools), I simply add water or broth to thin it. If I start pulling some up in the syringe to feed her and I notice it pulls hard or is thick, I simply thin it until it’s the right consistency. It’s been going great for us! I wish you well. Feel free to email me if you have more questions!

    psychmamma1 {at} gmail.com

     
  14. sarah

    May 12, 2011 at 8:37 pm

    since my mother takes care of him, I don’t know the technical names for it just yet but I know he has a mickey g-tube if that makes sense. He gets fed 200 cal 4 times per day and 400 cal continual at night. Does that make sense? He has a bag that the formual right now goes in and I think my mom is putting in goat milk and yogurt now but I don’t know how many times if it’s only 1 time or what but we’d like to know how to get his formula more organic and whole foods. We enjoy eating ourselves more on the raw vegan side so we hope to transition him when he is ready the right way. Thanks again for your help. I like your ideas about banana and apple sauce. My mom makes homemade apple sauce but it’s quite thick so not sure but I hope to try this thing out soon.

     
  15. sarah

    May 12, 2011 at 8:38 pm

    Maybe it’s 5 times I think that is more like it and he is 4 years old

     
  16. Shelley

    May 12, 2011 at 11:29 pm

    Hi!
    It’s been a week since we’ve been giving Henry homemade formula and it’s been great! His vomitting and retching are way down, almost no drool and most importantly… he’s happy, content and energetic! Yipee!

    I started a blog to share my experiences…
    http://henryshomemadeformula.wordpress.com/

    Cheers ,Shelley

     
  17. PsychMamma

    May 13, 2011 at 3:07 pm

    Shelley –

    That is absolutely fantastic news!! Go, Baby Henry!! So happy for you both! Will watch your blog for news and progress!

     
  18. PsychMamma

    May 13, 2011 at 3:11 pm

    Sarah –

    It does make PERFECT sense! In my opinion, there’s absolutely no reason why you can’t move toward a raw/vegan diet for him as well! Even more than your own diets, you simply need to be aware of his nutritional requirements and make sure he’s getting enough fat (the good kind), protein, vitamins, minerals, and overall calories. A fantastic book is Raising Vegetarian Children. Essentially, it you have a good blender and are aware of nutritional requirements, you can throw pretty much any foods in to create a healthy, balanced meal. You just need to make sure it’s liquefied enough to pass through hs tubing, which can be accomplished with the simple addition of water or broth. Keep up the fantastic work!

     
  19. Jessica

    March 7, 2012 at 9:14 am

    Thank you so much for writing this blog. I am always looking for something more natural to do for my son. I have just started looking into changing my son, Hudson, over to something organic with real food in it. I am a little nervous in starting because I want to make certain that he is getting the nutrients and fats he needs. I currently give him some organic superfood powder mixed with water by tube. I am quite certain that my GI doctor will not be supportive, but I am convinced his reflux is directly related to the formula he is on. You are so right about all of the waste! Not to mention the extra storage all of these items take up!
    Anyways, I would like to share another website I have found that could help you and others. It is called the Institute for the Acheivement of Human Potential. It focuses on actual healing of the brain, and has been around since 1955! The book they ask you to read, What To Do With Your Brain Injured Child, has great suggestions to get started. One of the exsercises for retraining the brain is actually being used with great results for my nephew with his therapist.
    http://www.iahp.org
    Also, we found great success in seeing improvement to our son’s tone, temperment, and health by doing Hperbaric Oxygen Therapy. At the end of the first week, he was able to hold his head up (age one at the time). About 2o years ago, a 4 yr old with CP did 120 sessions at the facility we went to, and when he was done, the only difference between him and his twin was a gated walk (which I think they corrected with therapy). If you can afford it, I would recommend going to a few professional sessions and then renting your own portable unit. i wish I had known about the rentals. We ran out of money for it after spending about $8,000 ($150/session). A two seater portable rental is about $375/mo on average. Good luck to everyone! I cannot wait to get my hands on the book you suggested. (fyi HBOT therapy is not widely accepted by medical community either (probably because it works)…so beware!

     
  20. Jacque Hall

    March 8, 2012 at 2:11 pm

    Hi, we are having diarrhea issues with our 22 year old grandson. He was born with severe Cerebral Palsy and all feedings are through his G-Tube. We have ruled out all medically possible internal problems and are left with finding the right formula to get the complete nutritional values he requires to sustain a healthy life. So far we have moved from Nutren 1.0 to trying Silk and Rice Dream. I am concerned about the actual nutrition and caloric values as the Nutren 1.0 provided 1500 calories and all nutritional requirements a day but the Silk and Rice Dream do not. I am encouraged to see there are alternatives. I plan to try the formula you have indicated above and hopefully your formula will regulate his bowel movements. Currently it is impossible to travel without the use of Imodium A-D. I know in my heart there has to be a better way for my wonderful grandson to live a better lifestyle. Hopefully your formula will make that happen. Thank you and God Bless you for posting this valuable information.
    Special Regards, Jacque

     
  21. Libra Smith

    April 12, 2012 at 11:35 am

    My son is G-tube dependent and your experience is going to be very helpful in my journey for better feeds for him. I am going to try and get this blender and the Mealtime Notions book and try somethings out thanks for the information very very helpful.

     
  22. Joy

    June 8, 2012 at 2:47 am

    thank you for sharing your experiences with the blended diet, we have just started it and it is going to be great, we are already seeing the benefits after a week. Have you seen the book called Complete Tubefeeding, it is a great resource too. Thanks again for sharing your journey

     
  23. Marilyn Connor

    June 9, 2012 at 10:24 pm

    OMG! This site has been such a blessing to me!! This really sounds very promising for my son. He has had so many issues with vomiting that he is on 3 medications for reflux. I am super excited about all of this information and will definitely be getting a Vitamix. Thank so much for all of your stories! xoxo

     
  24. PsychMamma

    June 12, 2012 at 4:36 pm

    Marilyn –

    So glad you’re finding helpful information! It’s always nice to hear that my sharing is benefiting someone! Wishing you all the best for your son! Let me know if you have any questions I can help with.

     
  25. PsychMamma

    June 12, 2012 at 4:37 pm

    Joy –

    Thanks so much for sharing the info about Complete Tubefeeding. I haven’t heard of it and will definitely check it out! Wishing you all the best!

     
  26. Sara @ Jonathan's Homemade Formula

    July 16, 2012 at 10:00 am

    We purchased Complete Tubefeeding several weeks ago, and it’s been a great resource! He also has a website http://youstartwithatube.blogspot.com.au/ that is very informative.

     
  27. Michelle

    August 8, 2012 at 11:07 am

    My son gets 90% of his calories through a g-tube. We do 3 meals with Compleat Pediatric (2 with Benecalorieadded) through the g-tube and one to two meals he eats something pureed by mouth. He is 8 years old and has been on Compleat Pediatric most of his life (breastmilk w/ supplement the first year and Nutren Jr year two). He has been diagnosed with Pervasive Developmental Disorder which is on the Autism Spectrum. I am interested in trying him on a gluten free casein free (GFCF) diet due to success stories I’ve heard about a decrease in autistic-like behaviors seen in some children following initiation of the GFCF diet. I cannot find a commercialized formula that is both GFCF. I am interested in trying your recipe above. The quinoa is gluten free however the goats milk and keifer is not casein free. Do you have any alternative suggestions? I am considering adding meat as well.

     
  28. PsychMamma

    August 8, 2012 at 5:41 pm

    Michelle –

    I’m not sure what to tell you about GFCF replacements for goat milk and keifer. Here’s what I’d *suggest*: Think about what the goat’s milk and keifer add to the recipe, and think of ways to replace that. In this case, it would probably be the fat, probiotics, vitamins and calcium. I’ve purchased probiotic capsules and simply open them up and add to the mix. You could increase the fat content with oils, nuts, etc. Vitamins and calcium could be added through supplements or through vegetables (people don’t realize green, leafy vegetables have calcium). You’re going to need something liquid to help get the right consistency for the tube. You can use chicken broth, water, etc for this. Adding meat sounds fantastic!!

    Good luck!!

     
  29. Jessica Valentini

    August 8, 2012 at 6:20 pm

    Michelle-I too make food for my child. For calcium and a liquid I use almond milk unsweetened. I am not sure if it has potential milk products or bi-products. My mother cannot eat anything with casien in it and she uses rice milk. So maybe you could use a good rice milk as an alternative. Also, on a side note, if you have never persued the Institutes for the Achievements of Human Potential to help your son’s development, I would suggest doing it. I bought one of their books and my son is already improving in behavior and ability by doing one of the excersices. http://iahp.org/

     
  30. Michelle

    August 16, 2012 at 11:31 am

    Thanks so much for all the suggestions. I signed up on a GFCF blog and have received many similar suggestions to look into – using more nuts, and vitamin rich fruits/veges. Hemp oil and hemp milk were also two other suggestions which seem to go along with your use of hemp butter. My husband is leary of using anything “hemp” although I’ve looked up several different sites that quote its wonderful benefits. I’m willing to think “out-of-the-box” but my nursing background still makes me a little hesitant. I’m trying to find an easy app for my ipad that will help me determine nutritional content of a diet. I will keep researching. I tried to look into the blenderized foods last year and was overwhelmed. Seeing my son’s autism symptoms increase over the past few months and learning about the GFCF diet has made me more determined. There is so much information out there on nutrition and much of it is conflicting. I just learned that canola oil which is reported to be very healthy, should be avoided because it is genetically modified. I sometimes don’t know what to believe but I will come up with an alternative solution to the commercialized formula.
    Michelle

     
  31. PsychMamma

    August 26, 2012 at 2:51 pm

    Michelle –

    Glad you’re finding some useful info! Hemp is nutritionally fantastic, and when I talked to a dietician & nutritionist about it, they were both thrilled that I was using it.

    Good luck on your continuing quest for health and knowledge! =)

     
  32. Anne

    September 30, 2012 at 2:44 pm

    My son is 3 and just got a g tube 3 months ago. He’ll eat some food by mouth and will drink milk (we are now on Boost 1.5) and water through a sippy cup. I just went out an bought a Vitamix. I really want to move him off Boost because he has burping issues which I wonder if they are because of so much milk. None of the various GI doctors have any idea why he has to burp so much (and he will not eat if he has to burp). Anyway, we have currently been doing some Boost through the g tube at 200ml/hr. What speed are you putting the food through at or do you do bolus? How long does it take to do 150ml when doing bolus? Do you just sit there holding the 60ml syringe? Thanks for your recipe. I’m going to try it this week.

     
  33. PsychMamma

    October 2, 2012 at 2:05 pm

    Anne –

    Thanks so much for your comment! Hopefully, I can answer some of your questions.

    I HAVE thinned the formula with the Vitamix enough to get it to go through the feeding pump tubing. You have to be very careful about anything with seeds or skins (strawberries and blueberries especially get stuck in the tubing). I found that thinning with Boost Plus works best, because it keeps the calorie count of the formula up. You can thin with broth, water, milk, soy milk, almond milk, hemp milk, etc, but remember that the more you thin the consistency, the fewer calories you’ll be administering with each feed. It’s a tricky balance.

    During the day, when Jenna’s awake, we do bolus feeds via syringe. I can fill a 60mL syringe and put the whole thing in in one minute. I wait around 10-15 min and do a second syringe at a slightly slower rate, and then wait another 10-15 min to give the final syringe at a little bit slower rate. We only do 180mL at a time via syringe and can do the full 180 in 30-40 min. We’ve found it’s best for her to do something quiet-ish for 30-60 minutes after the feed to minimize chances of vomit.

    All of the rates and times I’m giving you have gradually increased. When we came home from the hospital, we started on a more continuous, VERY SLOW feed via pump for a long time. We gradually added more and more mL/hour until she got to the point she is now, at six years old. I can’t tell you what your kiddo will tolerate – you’ll just have to try trial and error. It’s always better to start more slowly (less mL over longer time) and gradually increase to administering the feed faster with more mL.

    Hopefully, this helps you out a little bit. Feel free to email me if you have more questions!

     
  34. Kandace

    November 27, 2012 at 12:54 pm

    It’s so great to find other people who make their own feeds. I am the oddball to my daughter’s doctors. Our house is almost entirely organic and we do not purchase processed foods and are headed toward gluten free as well. I believe the doctors do best with the products they have to recommend and their knowledge, but its not all there is. We weren’t made to live on man made synthetic parts and pieces. How can we expect amazing things and healing to happen if our loved ones do not get the best their is?

    Her hematologist was absolutely dumbfounded when Hailey’s severe anemia disappeared after about 6 weeks of replacing the formula with fresh juices. I was fortunate enough to be able to get a Norwalk juicer and after a lot of experimentation and research found that a combination of carrots, apple, fennel and beets was what she needed. I have since broadened her feeds with using a vitamix and using more whole foods with including the fiber but it does get frustrating when I spent a lot of time making something and it clogs the line. I really wish they made wider sets to allow thicker food to pass through.

    I have also experimented using superfoods and superherbs which I get from http://www.longevitywarehouse.com and http://www.rawrevelations.com/. Did you know that raw cacao is one of the most Magnesium rich food sources and one of the highest antioxidants? These foods are amazing.

    I’m sure I will still be experimenting and changing things as I go. I’ve had a lot of encouragement from others to make my own site and let people know other ways you can do things other than what medical doctors tell you. They do amazing things. I however do not agree with them on certain subjects.

    I do have a question… has anyone had problems with gastric acid leaking out from around the G-tube? My daughter experiences this and it is extremely painful. Her G-tube size has been changed twice to give her a better fit but it keeps happening. She has a very short and thick stem on her button now. Or does anyone know of any other brands? I don’t know it seems like it should work better than it does at preventing leakage.

    Also, my daughter’s site is healinghailey.com

     
  35. Jessica

    November 28, 2012 at 3:50 pm

    Our sons g-tube area leaked alot in the beginning, but now it does not. I think a lot of healing time had to go into it. Also we tape it down well, regardless if the tube extension is attached. Although i am not a fan of alot of medicines, we were given a topical past called Calmeseptine ointment. His area usually looks better after one application. And we rarely use sponges around the area, unless we apply the ointment, so the skin can breathe. Our surgeon was very impressed with the health of the area. I hope this helps.

     
  36. Melissa

    January 28, 2013 at 10:21 am

    Nice job! You use some things that I had not thought of. Thanks for the post!

     
  37. Ahoo

    April 7, 2013 at 8:06 pm

    Came across your blog when I was looking for a way to replace my son’s Pediasure (through his g-tube), which I was sure was causing him to throw up. He is tolerating this homemade formula beautifully and we’ve had great results. The only concern is that the mixture is often really thick and difficult to push through with a 60ml syringe. This is after we we have used to Vitamix to make the mixture and strained it as well. Any tips you have about how much water to add, or any other recommendations would be greatly appreciated. Thanks again for sharing this formula.

     
  38. PsychMamma

    April 23, 2013 at 4:22 pm

    Ahoo – So glad to hear that your son is tolerating the blended formula so well! We’ve also had problems with the thickness of the formula passing through the tube and pump. I’ve played around with adding water or more liquid in the form of almond/rice or coconut milk, but the problem is that then you lose calorie density. You can thin it, but you need to make sure that you’re then feeding more in your dose to compensate for the calorie loss. We’re currently in the process of moving, but, once we’re settled, I plan to play around some more in the kitchen to see if I can come up with something better. I’ll keep you posted! Until then, good luck!

     
  39. Shannon

    June 19, 2013 at 5:22 am

    Just found you… I am so tired of Neocate jr.. My son is almost 5 and doesnt eat much by mouth. I want to do some blended food in tube. Thanks.. Summer is good for me.. I will let you know how it goes. Heston does 5 bolus feeds a day, 30 cal. 9oz.

     
  40. grandma lorraine

    June 19, 2013 at 12:47 pm

    Hi My name is lorraine My granddaughter has a feeding tube she is 10 she also has a trache we bolus feed her she eats by mouth and is continualy feed over night if she is well when she getts a cold she has to be suctioned all night and the formula makes her more junky she has a hard time gaining weight now about 50lbs we are looking into tube feeding her more so she will get stronger and not sick so much is the size of the mickie button an issue or the feeding tube

     
  41. Ahoo

    August 6, 2013 at 1:40 pm

    Still doing fantastically on this formula. We keep recommending this site to others. I’m wondering if you modify the formula for night feedings. My son has never slept through the night. Any thoughts or recommendations would be appreciated.

     
  42. adriana

    November 12, 2013 at 9:50 pm

    I am hoping some mothers may have answers to why my cousin who is 3 years old, cannot tolerate G-tube feedings. He is currently in hospital, and can tolerate 20ml/hr, however once the feeding is increased he is in severe pain and becomes extremely irritated. Thus far, he is losing weight and has decreased energy. The hospital has not switched his formula and I am wondering if anyone has experiecned their child developing an allergy around 3 years old. As well, an incident with school nurse filling the tube with air three times back in September, could this be related. We are praying for some answers and I will keep you all in my heart as well. Thank you for your blog and support.

     
  43. PsychMamma

    November 13, 2013 at 10:19 am

    Adriana –

    I’m so very sorry to hear about your young cousin. I’m also sorry that I don’t have an answer for you. The doctors are the best ones to determine what’s going on, and I hope they figure things out quickly. As far as the air in the tube, I’ve never heard of that causing lasting issues. Air in the tube usually just leads to momentary discomfort, and gas that’s passed by burping or from the other end. I would encourage you to not hesitate to ask the doctors ANY questions that you have. If you have concerns or questions, be persistent and ask until you get an answer that you understand. I will keep your family in my thoughts and send you all good wishes for a speedy recovery and a return to weight gain and comfort for your cousin.

     
  44. forevershea37

    November 16, 2014 at 4:07 pm

    I have gastroparesis and have avoided the j-tube because I am concerned with gluten, dairy and soy allergies. Some substitution would have to happen because I am allergic to egg also. Diet is tricky but with worsening gut function, I was reconsidering the option of the j-tube, but when I mentioned to a friend that I normally prefer what I call my “homemade Ensure” which I have kept myself going on for quite some time. I also was happy to see there’s something I could make myself. This gives me some hope that when I see my GI team I can also look at this again. Anything that makes this more liveable I am definitely in favor of. Thank you for helping bring some normalcy to this level of intervention!!!

     
  45. Danielle

    January 8, 2016 at 9:39 pm

    You are free to do as you please, but if i may suggest, stop using miralax. It has been linked to serious health conditions. my three children are autistic, oral aversions and will only accept pediasure. My daughter does noy consume enough on her own and received a G-tube a couple years ago. She too has bowel issues and they suggested we used miralax. I used it maybe two times and didnt see a difference in her movements and stopped. Months later i found out about the reports of health risks linked to this and felt blessed that something, maybe a mothers gut feeling, told me to stop giving this to her. I will only use prune puree or prune juice now. I checked out your site as im trying to transition off pediasure as well and continue with our natural living. Thank you for your post i will def. be referencing it in the near future!

     
  46. Kristine

    January 17, 2016 at 11:21 pm

    Would this be exceptable for a daily diet for an adult? Im having trouble finding a Gastroparesis friendly formula to replace my pharmaceutical ones.

     

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