Results 1 to 8 of 8

Thread: Primal Enterral Formula Recipe for G-tube Feeding page

  1. #1
    griffa's Avatar
    griffa is offline Junior Member
    Join Date
    Feb 2012
    Posts
    8

    Primal Enterral Formula Recipe for G-tube Feeding

    Shop Now
    Hi!

    My son is fourteen, has spastic quadriplegic cerebral palsy, and is completely g-tube fed. Since he was sixteen months, and first got his g-tube, we have been using Pediasure Enterral Formula for his complete nutrition. A large portion of the calories in this formula come from sugars, and since he's not even tasting the stuff I'd like to get him off of both the milk (it's a milk-based formula, as opposed to soy) and also remove a lot of the sugar from his daily diet.

    Last year my husband and I began eating a primarily primal/paleo diet, and I've recently been feeling guilty that our diets are so clean and healthy, but my son is still being fed the crap prescribed by his dietician. I've really gone rounds in my head about how to change things because in raising a special-needs child with so much medical intervention, I have to be careful to follow medical recommendations. At this point I have sought no advice on switching him over to a primal diet, as I know that I would not be supported by the medical community, probably not for ANY child, but especially one with special needs. My husband and I have both had phenomenal gains in health and energy, and feel that we would love to see our son have the same opportunity to feel his best and be as healthy as he can.

    I would like to start him on a homemade formula based on primal micro-nutrient ratios, but am unsure how to proceed for a fourteen-year-old child. I keep thinking about how I would feed a typically-developing child his age, but I'm not sure with most kids a primal diet would even be possible, so I'm not sure the issue would even come up.

    Does anyone have experience feeding teenaged kids a primal diet, and if so, what micro-nutrient ratios are you sticking with?

    My husband and I are lower-carb by default, since we don't eat beans or grains, however we do eat an almost obscene amount of vegetables. Fruits are very moderate, and mostly berries.

    Is this a truly healthy diet for a growing child?

    Where can I find good information on calorie needs for children on paleo-primal type diets?

    Is coconut milk an adequate source of fat for a child? I need to use a liquid for blending the food, and thought full-fat coconut milk might be good for this.

    Since taste is not an issue, I was planning to rotate beef, chicken, fish, and eggs. Are these varied enough protein sources for a balanced diet?

    Do I need to supplement amino acids if I'm using meats and fish as the protein source?

    I'm not expecting to find "medical advice" here, but if anyone would be willing to share any experience they have feeding teenagers a primal diet I'd sure appreciate it!

  2. #2
    SteakNchop's Avatar
    SteakNchop is offline Senior Member
    Join Date
    Nov 2010
    Location
    San Francisco Bay Area
    Posts
    411
    My son is fourteen, has spastic quadriplegic cerebral palsy, and is completely g-tube fed. Since he was sixteen months, and first got his g-tube, we have been using Pediasure Enterral Formula for his complete nutrition. A large portion of the calories in this formula come from sugars, and since he's not even tasting the stuff I'd like to get him off of both the milk (it's a milk-based formula, as opposed to soy) and also remove a lot of the sugar from his daily diet.

    Last year my husband and I began eating a primarily primal/paleo diet, and I've recently been feeling guilty that our diets are so clean and healthy, but my son is still being fed the crap prescribed by his dietician. I've really gone rounds in my head about how to change things because in raising a special-needs child with so much medical intervention, I have to be careful to follow medical recommendations. At this point I have sought no advice on switching him over to a primal diet, as I know that I would not be supported by the medical community, probably not for ANY child, but especially one with special needs. My husband and I have both had phenomenal gains in health and energy, and feel that we would love to see our son have the same opportunity to feel his best and be as healthy as he can.Your doctor/dietitian is your worst enemy. He's there to make money, follow the incorrect protocols he was taught and avoid lawsuits, not make your child healthy. He is your child, not your dietitian's child. If your dietitian is great and gives you good advice than you're luckier than 99.9% of people who seek help from a dietitian. More likely, he's just passing on the BS he learned in school.

    I would like to start him on a homemade formula based on primal micro-nutrient ratios, but am unsure how to proceed for a fourteen-year-old child. I keep thinking about how I would feed a typically-developing child his age, but I'm not sure with most kids a primal diet would even be possible, so I'm not sure the issue would even come up.
    Remember, primal is not about micro or macro-nutrient ratios. It's about eating a certain set of foods which are least offensive to your body. There is no such thing as primal micro-nutrient ratios.

    Does anyone have experience feeding teenaged kids a primal diet, and if so, what micro-nutrient ratios are you sticking with?


    My husband and I are lower-carb by default, since we don't eat beans or grains, however we do eat an almost obscene amount of vegetables. Fruits are very moderate, and mostly berries.

    It sounds like you are confusing micro-nutrient ratios with macro-nutrient ratios. Micro-nutrients are nutrients like potassium, vitamin A, magnesium, etc. Macro-nutrients are carbs, protein, fats and alcohol. Forget about ratios. I don't know the specifics about your medical situation and how he's fed, but you can toss some beef, sweet potato and broccoli with coconut milk and that would cover most things. Swap out a few things (chicken, fish, eggs, skinless white potato, carrots, liver, white rice, kale, tomatoes, seaweeds, etc.) and toss in a few extras (fruit, berries, spices, nuts, etc.) and you're good to go. If you're going to be feeding him so much coconut milk, you may want to consider making it yourself, (fairly easy) because the store bought varieties contain gums.

    Is this a truly healthy diet for a growing child?

    What do you mean? Is eating food which is harmful for one's body a truly healthy diet for a growing child?

    Where can I find good information on calorie needs for children on paleo-primal type diets?

    [I]Why would you need to change his caloric needs presuming he is currently eating the correct amount? [/I]
    Is coconut milk an adequate source of fat for a child? I need to use a liquid for blending the food, and thought full-fat coconut milk might be good for this.
    May be better off with animal fats. Buy a bucket of tallow from US Wellness and toss some of that in.
    Since taste is not an issue, I was planning to rotate beef, chicken, fish, and eggs. Are these varied enough protein sources for a balanced diet?
    [I]As long as he's eating some sort of red meat, he'll be fine. The only reason to vary it would be financial reasons and maybe some added benefits of reasonably sized amounts of organs and fish.[/I]

    Do I need to supplement amino acids if I'm using meats and fish as the protein source?

    No supplements are necessary provided he's eating real food.

    I'm not expecting to find "medical advice" here, but if anyone would be willing to share any experience they have feeding teenagers a primal diet I'd sure appreciate it!Are you saying that the "medical advice" to feed your child crap for 14 years is better than the advice you get here?

  3. #3
    marthat's Avatar
    marthat is offline Senior Member
    Join Date
    Jun 2010
    Location
    Ontario, Canada
    Posts
    1,053
    I am a Registered Dietitian, though I have little recent experience in pediatrics (I work in geriatric care). If you were to approach your MD and RD with your desire to feed your son a home-made tube feeding, you may or may not get support. But he is your son and you can indicate that you plan to at least supplement his current feedings with good home-made stuff. (That would be a good place to start.) The actual hardware of the tube may need to be changed to allow a different texture, so discuss that with them. And you need at least a Vitamix to really get the smoothest product available. As I'm sure you're aware, a clogged feeding tube is a pain in the neck.

    And you will need to be very aware of his bowel response to such as change/supplementation. He may either have loose stools or may plug up for days, hard to tell. Either way, it would hopefully be a short-term adjustment issue only.

    Start with simple stuff after you get the MD's go-ahead, like peach or mango pureed with coconut milk, or sweet potato pureed with bone broth. Only 1-2 items per feed until you get a sense of his response. Just like testing for food allergies. And remain with the Pediasure until you have enough experience and enough variety of items tried and proven tolerated. Some combination of the enteral formula and whole foods supplementation may end up being the best of both worlds.

    There is a tubefeeding product that has been around for decades called Compleat. It is made from chicken, peas, carrots, etc. It existed since before most of the soy protein/sugar/corn oil formulas that are used now. Might be worth looking into. Nestle Nutrition appears to be the current maker.

    BTW, I work in the Canadian healthcare system, where there is absolutely no personal financial gain to be had by recommending any particular product, or tube feedings at all unless appropriate. The previous poster makes all healthcare professionals sound callous and closed-minded. We're not all like that!

  4. #4
    apple's Avatar
    apple is offline Senior Member
    Join Date
    Jan 2011
    Location
    US
    Posts
    343
    Thanks marthat! I have worked with a few kids (as a speech/swallowing therapist) that sound similar to this boy. When I read this, I became specifically worried about tube hardware and digestive changes that would possibly occur, so I definitely wanted to back up your advice here!

    I also want to add: we all know that even regular 14 year old boys can burn a LOT of calories. I worked with 2 different boys around age 11 who both had spastic diplegic CP and because of the extreme spasticity, they burned between 6000-8000 calories a day just sitting in their wheelchairs (this was proven by some medical test the docs had ordered, probably due to them being long and skinny boys!). A 14 y/o might burn even more. Definitely monitor weight changes very closely with your doctor, and be very open with your doctors regarding what you are trying nutrition-wise. Take med journals proving paleo/primal is healthy if you have to convince them. Make sure you emphasize that you think the soy/milk and sugars provided in pediasure are not healthy, and take a long list of the foods you want to try to feed him. And don't be afraid to give him a much larger source of healthy carbs than you and your husband yourself eat; he is growing, and he is a calorie burner.

    I would definitely watch out for any changes in seizure activity. Even if your child isn't prone to seizures, they are much more likely to occur with changes in diet for these kiddos.

    Good luck, definitely! I think what you are doing is amazing, and I hope you see some positive changes in your son. I'd be very interested to know if his muscle tone improves with a more paleo-based diet!
    Type 1 Diabetic. Controlling blood sugar through primal life.

    2012 Goals:
    Maintain A1c of 6.0 or lower
    More dietary fat, less carbs, moderate protein
    LHT and sprint as per PB fitness
    Play more!

  5. #5
    primalswan's Avatar
    primalswan is offline Senior Member
    Join Date
    Mar 2012
    Posts
    126
    I am not an expert and you have some great advice already from a few but wanted to chime in from a mom's perspective. My kids eat about 90% Paleo. We do raw whole milk and very occasionally rice or certified gluten free oatmeal. They eat a boat load of fruit and starches and about twice as much meat and vegetables than they used to eat. They are 7 and 4 and both incredibly active boys. Since we started eating this way 3.5 months ago they have both grown an inch and gained about 2lbs. This is huge for my oldest who is on the lower end of his growth curve. My mom thought they were going to waste away to nothing because she feared that by cutting processed carbs, grains, and sugar that they would be "low carb". Far from it! They eat a few peaches, some cherries, a big ol sweet potato instead of a granola bar, some pasta, and hunk of bread. My husband and I marvel at how eating this way gives every body what they need. We are shrinking and gaining muscles, while our kids are growing taller and stronger. I hope you can find a way to make it work. I can only imagine how much you want him to feel as great as you do!

  6. #6
    griffa's Avatar
    griffa is offline Junior Member
    Join Date
    Feb 2012
    Posts
    8
    I will pay attention to his bowel response. That's a good point.

    I'm trying to get away from any more "canned" items, but I realize that there will be times when preparing his formula may be impractical, and that during hospital stays and such it will be difficult to maintain, so perhaps I will look into changing what we are giving him to the other that you suggested for those emergency situations.

    I sit somewhere in the middle ground of where you and the previous poster are. I also agree that most dieticians here in the US, and especially those working in pediatric rehabilitation, are parroting the party line with diet and nutrition. The USDA recommendations and FDA and AMA "suggestions" are what are followed and prescribed.

    I am very aware that this is MY CHILD, and his dietary needs should be mine to consider on my own. However, the point that the previous responder fails to note is that here in the US disabled kids who turn 18 must be granted a guardian, and the parents must also apply for guardianship. Things like medical compliance are heavily considered in court hearings, and going against medical advice must be really thought out ahead of time. Guardianship has been denied parents based on lesser offenses, so I am cautious. When my husband and I made the decision to go against established medical protocol for diet and began eating what our PCPs thought was "too much" saturated fat, all we risked was disapproval. With my son we are risking much more, and I must proceed with extreme caution.

  7. #7
    griffa's Avatar
    griffa is offline Junior Member
    Join Date
    Feb 2012
    Posts
    8
    My son has had "irregular electrical" activity, as shown on eeg, from the start, but at this point we have only seen two seizures. He is on regular meds for seizures as a precaution. I guess I was thinking, in light of the fact that the ketogenic diet has been used for preventing seizures, that if anything giving him LESS sugar would be of benefit to him in that respect. Have you actually seen increased seizure activity with dietary changes?

  8. #8
    griffa's Avatar
    griffa is offline Junior Member
    Join Date
    Feb 2012
    Posts
    8
    Good to hear that your sons are responding so well.

    Yes, we are looking forward to less illnesses, and increased energy! He fights gravity every day with his CP, and more energy can only make it all easier for him!

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •