Using Elemental Formulas for Nutrition in SMA Mary

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Using Elemental Formulas for Nutrition in SMA Mary Bodzo & Stephanie Price RN

Using Elemental Formulas for Nutrition in SMA Mary Bodzo & Stephanie Price RN

DISCLAIMER n n n This Diet has no Peer Reviewed Double Blind Studies This

DISCLAIMER n n n This Diet has no Peer Reviewed Double Blind Studies This presentation is based on our experiences “You must look at the facts for the facts are looking at you. ” Winston Churchill

Diet Principles Provide free form amino acids (protein) n Follow the Basics of the

Diet Principles Provide free form amino acids (protein) n Follow the Basics of the SMA Diet n Little changes make a HUGE difference n Educate yourself n n You See What You Know …If You Don’t Know It, You Can Not See It

Basic Diet n Tolerex or Pediatric Vivonex n Water and/or Juice n Fruits and

Basic Diet n Tolerex or Pediatric Vivonex n Water and/or Juice n Fruits and Vegetables n baby food n Oil n Vitamins, Minerals and Supplements

Tolerex or Pediatric Vivonex Most important aspect of diet n Provide free form Amino

Tolerex or Pediatric Vivonex Most important aspect of diet n Provide free form Amino Acids n Elemental formulas n Mfg. by Novartis Nutrition n n 800 -333 -3785 Walgreens Pharmacy can order n Expensive, often paid for by Insurance or Medicaid n

Tolerex n 1 -2 packets daily over 24 hrs. n Double n 4 -6

Tolerex n 1 -2 packets daily over 24 hrs. n Double n 4 -6 n Do Dilution equal size feedings Not exceed 2 packets daily

Pediatric Vivonex n 1 -2 packets daily n 4 -6 equal size feedings n

Pediatric Vivonex n 1 -2 packets daily n 4 -6 equal size feedings n Usually - Infants and very young n Has a little more fat than Tolerex n Less calories & carbs. than Tolerex n Met with greater approval from Dieticians

Common Errors n Nutritionists & Physicians: n Prescribe formulas as if for healthy children

Common Errors n Nutritionists & Physicians: n Prescribe formulas as if for healthy children n Over-load with protein n Over-load with calories n Over-load with fats

Warning Signs n. Signs of Protein Overload n. Nausea n. Increased Heart Rate n.

Warning Signs n. Signs of Protein Overload n. Nausea n. Increased Heart Rate n. Decreased Oxygen Saturation n. Less Urine Output n. Bloating

Warning Signs n. Sensitivities n. Flushing n. Sweating n. Secretions n. Increased Heart Rate

Warning Signs n. Sensitivities n. Flushing n. Sweating n. Secretions n. Increased Heart Rate n. GI distress n. Increased Respirations

Water or Juice n At least 20 oz daily n Enough to properly hydrate

Water or Juice n At least 20 oz daily n Enough to properly hydrate n Enough to keep secretions thin

Baby Foods n Green Beans n Sweet Potatoes n Bananas n Most all fruits

Baby Foods n Green Beans n Sweet Potatoes n Bananas n Most all fruits n Check labels n Ingredients n Calorie contents n Protein contents

How to Mix Formulas Blender n Vitamins, Minerals, Supplements n Juice/Water/Rice Milk n Double

How to Mix Formulas Blender n Vitamins, Minerals, Supplements n Juice/Water/Rice Milk n Double Dilute n DO NOT MIX n n Milk/Soy based formulas with elemental formulas n Breast Milk in a blender

Mixing Continued Baby foods n Add one at a time/ watch for sensitivities n

Mixing Continued Baby foods n Add one at a time/ watch for sensitivities n Juices n Welchs White Grape n Pear n Indian Summer Cherry n Corn Starch n

Water n More is better n Enough to keep secretions thin n RDAs are

Water n More is better n Enough to keep secretions thin n RDAs are meant to meet ½ nutritional needs of a HEALTHY person n RDA Minimum n 1 -3 yrs 108 cc/kg n 4 -8 yrs 85 cc/kg n Water Intoxication

Illness n When fevered…Add more WATER n Slow the rate of feeding n Venting:

Illness n When fevered…Add more WATER n Slow the rate of feeding n Venting: n G-Tube n Bi. Pap n Ketones fed

Ketones & Blood Sugar n How to check for ketones n Uristix n Ketostix

Ketones & Blood Sugar n How to check for ketones n Uristix n Ketostix n Do Not want n. Glucose n. Protein n. Ketones

Ketones Muscle Wasting § Supplies needed § Ketostix/Uristix § Cotton balls or 2 x

Ketones Muscle Wasting § Supplies needed § Ketostix/Uristix § Cotton balls or 2 x 2 gauze § 3 cc syringe § Watch §

G-Tubes n Types n Feeding n Pump vs. bolus n Cleaning n Venting

G-Tubes n Types n Feeding n Pump vs. bolus n Cleaning n Venting

Yeast Infections n Signs and Symptoms n Smelly ears/toes/fingers/groin n Yogurt n Acidophilus

Yeast Infections n Signs and Symptoms n Smelly ears/toes/fingers/groin n Yogurt n Acidophilus