Here’s a list of what Elizabeth “eats” every day– I’ve written it in the form we recognize of meals and snacks. In reality, the few enjoy life mini chips and a couple licks of PB is all she takes in orally. We also give an extra 16-24oz of water daily.
Breakfast: 1/2 cup quinoa with 1/4 cup blueberries, 1/2 cup almond milk, mct oil & maple
Snack: banana w/ natural peanut butter topped with a few enjoy life chocolate chips
Lunch: 2 oz organic ground turkey, 4 baby carrots & arugula drizzled with olive oil, 1/2 cup almond milk
Snack: 1/4 cup blueberries w/ 1/4 cup cashewgurt
Dinner: 2 oz organic ground beef, 1/2 cup quinoa w/ olive oil & pink salt, 1oz broccoli steamed, 1/2 cup almond milk
Before Bed: 1/2 cup warm almond milk with honey and mct
Meets 96% of daily targets
iron 129% (heme)
This (all organic, all homemade) meal plan is pretty close to perfect- it has a little more added sugar than I’d like to see, but for calorie density it’s what we need currently.
Showing this meal plan to any dietician or nutritionist meets ZERO reservations. You’d be applauded for an oral eating kiddo who has a food diary like this. This menu has adequate intake of all nutrients, heme based iron, allergy friendly, non-processed, no fast food, no chemical “foods”, all nutrients are from actual food- not synthesized in a lab.
When they learn she is tube fed and that this menu is blended up in our amazing Vitamix and fed through her J tube… all the sudden, there are lots of issues/concerns. If they can’t find enough issues to address with the nutrients (my favorite is the vitamin A concern– y’ll– she gets an ounce of baby carrots, my oral eaters consume more every day and IT’S FOOD), then they start in on how real food will CLOG her feeding tube. Hmmm… well, I’ve been doing this for over two years now without a single clog. Even if her tube did clog- it’s not that hard to clear! Formula gets thick and sticky and is notorious for clogging feeding tubes. Next they might go into osmolality or try to convince me she will have horrid diarrhea. The litany goes on, you can’t thin food enough without losing too many calories, we need to know exactly how many nutrients she is getting… Again- why do we have to micromanage every single calorie and nutrient that goes into her body just because she has a feeding tube? We don’t feed orally eating children this way- we encourage a balanced diet and we add a multi-vitamin to fill the gaps and we are told “don’t worry it’ll all even out”.
Here is what her meal plan would look like if I fed her according to *best practice* for a tube fed child with her diagnosis of FPIES.
Elemental Formula mixed with water to make 40 fluid ounces (1200ml)
Corn Syrup Solids (54%), High Oleic Safflower Oil (9%), Medium-Chain Triglycerides (8%), Soy Oil (7%), L-Glutamine (2%). Less than 2% of: L-Asparagine, L-Leucine, DATEM, L-Lysine Acetate, L-Valine, Calcium Phosphate, L-Isoleucine, Artificial Flavor, Potassium Phosphate, L-Arginine, L-Phenylalanine, L-Tyrosine, Potassium Citrate, Sodium Citrate, L-Threonine, L-Proline, L-Serine, L-Alanine, Magnesium Chloride, Glycine, L-Histidine, L-Methionine, Ascorbic Acid, Calcium Carbonate, L-Cystine Dihydrochloride, L-Tryptophan, Magnesium Phosphate, Choline Chloride, Aspartame, Inositol, Acesulfame K, Ferrous Sulfate, Taurine, Ascorbyl Palmitate, Zinc Sulfate, dl-Alpha-Tocopheryl Acetate, Sucralose, L-Carnitine, Niacinamide, Salt, Calcium Pantothenate, Manganese Sulfate, Thiamine Hydrochloride, Copper Sulfate, Vitamin A Palmitate, Riboflavin, Pyridoxine Hydrochloride, Folic Acid, Beta-Carotene, Biotin, Phylloquinone, Chromium Chloride, Potassium Iodide, Sodium Selenate, Sodium Molybdate, Vitamin D3, and Vitamin B12.
Let’s break that down-
L-Glutamine plus other amino acids
synthetic vitamins and minerals
meets 64% of daily targets
protein 36.23 g
fat 57.4 g
carbohydrate 125g (100% sugar- 5x the daily recommended added sugar intake)
Sorry Docs, I chose REAL FOOD every time.