Vivianna’s Diet

Vivianna, age 6, Type 2 SMA

Vivianna was DX at 9 months. I read about the AA diet shortly after and to be honest my first thought, these people are crazy. So we followed our dr’s advice and met with a GI/nutritionist . Who advised us to add butter, pudding, oil, buttermilk, yogurt and pediasure to Viv’s diet. We did and she quickly became ill. Bloated, flushed, high RR, etc. I quickly changed my mind about this ‘crazy’ diet and called Mary Bodzo. Within days of starting the diet, the bloating, flushing, constipation..gone. Over time, I noticed she had much more energy as she wasn’t working so hard to digest her food. She began to gain weight at a slow and steady pace. She also wasn’t drooling as much. We decided to have a g-tube placed (proactively) This is when we were able to really see the results of this diet. Best way to describe the changes…She blossomed. She looked healthy. She was growing. Eliminating dairy from her diet, eliminated the secretion (non illness) she had on a daily basis. Over all she was stronger. Being able to control how, what and when she was fed made all the difference. What my husband and I really love about this diet….during times of illness, she is not working hard to digest her food, she is able to use her energy to heal. We are also not overloading her with proteins and fats creating other problems and adding to her illness.

• Current weight 21kg
• Calories 65-70 cal/kg (typical intake 1365- 1400)
• Protein 1gm/kg
• Total Fluids 2600ml min Does not include flushes, water either oral/bolus

Diet:

• 1 pkg tolerex
• 1 bk Splash
• Almond Milk
• Sugar free organic juice
• baby foods…banana, sweet potato, apple/grape. (any 120 cal/2 gm protein or higher that does not contain milk products)
• Or blended foods…sweet potato, avocado, greens, oatmeal
• Current supplements (will chg based on labs)
• children’s’ ionized mineral/amino acid multi vitamin
• coq10
• B complex
• 2 caps Organic India Turmeric
• Vit D to = 2000 iu
• Vit C
• Glutamine
• BCAA Powder ( leucine, isoleucine, valine)
• Carnitor
• Liquid Calcium Magnesium Citrate
• Primadophilus
• Cytolog
• Flax-seed oil 1/2 tsp (will omit if avocado is used)
• Miralax approx 10 gms
• pedialyte 250mls
• Evening feeds
• Tolerex, Miralax , 750ml almond milk. 250ml pedialyte, water 570 calories
• continuous feed
• Calcium Mag Citrate, 1 Turmeric bolused

Daytime Feeds

1 brick splash mixed with juice/water to = 1600ml, remaining supplements added and enough blended food or baby food added to = 830 calories. I vary the foods I add into her feeds.. I do not want to give her bananas each day as they will bind her.. Same as pears..only that has the opposite effect.

Viv is NOT on a continuous feed during the day except in the afternoon when she rests. At that time she will receive 600ml. The rest is given in a bolus. IE breakfast, lunch, dinner hrs. I do not count any extra water given during the day.

During the school yr, I give V approx 1/4cup cooked blended oatmeal before school. She ‘snacks at home but as a rule I do not allow the school to feed her and she gets hungry.

Foods she eats by mouth.

Hummus, avocado, tomato, salsa, all type of pasta (must have sauce) chips, soup…she loves spicy lentil soup. Mashed potatoes, gravy, pickles, olives, limes, lemons, crackers, spinach, kale, black beans, (rice can be a challenge) pizza. I don’t count the calories of anything she eats by mouth, unless she eats a lot. Those days, I will replace juice or almond milk with water.

Vivianna’s diet is always a work in progress. It changes based on lab results and even the time of year. Typically during cold and flu season, I will increase her caloric intake slightly.

Because we started this diet while she was very young, I don’t have to restrict her foods. She really doesn’t care for sweets, never liked meat. But I also do not let her go with out. If the boys are having ice cream, she does too. Although most of the time she just doesn’t want it. When she does, she’ll eat about tablespoon and say she’s done. If she’s sick or has even just allergies, I do not allow this at all as secretions will increase. (this happens with Rice Milk ice creams too) If the boys have a Happy Meal as a treat, she gets one and will eat a few fries and maybe take eat a 1/4 of a chicken nugget. I am lucky though because she would rather eat a tomato than a burger.