Staying Healthy with O.I. Pediatric Nutrition

Staying Healthy with O.I.
Pediatric Nutrition
Sharon Werner RD CDE CD-N
Registered Dietitian
Certified Diabetes Educator
Mother of best kid in world
OI Parent
July 2012

Disclosures
‣ Connecitcut Children’s Medical Center:
Endocrinology
• Dietitian – Diabetes Educator
‣ Animas / LifeScan
• Insulin pump trainer
‣ Medical Nutrition Therapy Associates:
• Director
• Private practice nutrition counseling and
weight management: In person and Skype

Nutrition Related Health Issues
‣ Constipation
‣ Swollowing difficulties
‣ Failure to Thrive
‣ Small appetites, big energy needs
‣ Weight Management
‣ General good nutrition
‣ Vitamin D and Calcium
‣ Getting Active

Preventing Constipation
‣ An ounce of prevention is better than a pound of cure!
‣ Causes reduced appetite and vomiting
‣ Constipation vs encopresis (incontinence of feces not due to organic
defect or illness)
‣ Causes:
• Medications (anti-seizure, pain meds – especially opiods,
antidepressants, antihistamines)
• Low fiber diet
• Inadequate fluid (not thirsty / avoiding bathroom)
• Nerve damage, pelvic shape, hypotonia, obesity
• Stress, ignoring the urge
• Calcium and iron supplements, diet changes
• Inactivity

How much fiber?
‣ Old Way: Age plus 5g, or 0.5g/Kg per day, or 14g /
1000 calories
‣ Adequate Intake (per NIH)
‣ 0-6 months
None set
‣ 7-12 months None set
‣ 1-3 years
19 g/day
‣ 4-8 years
25 g/day
‣ Boys 9-13 years 31 g/day
‣ Boys 14-18 years 38 g/day
‣ Girls 9-13 years 26 g/day
‣ Girls 14-18 years 26 g/day

How much fluid?
‣ For infants and children:
• 1-10 kg 100-150 mL/kg
• 11-20 kg Add 50 mL/kg over 10 kg
• >21 kg Add 25 mL/kg over 20 kg
‣ Adolescents:
• 40-60 mL/kg

Resolving constipation
‣ Increase fiber, especially soluble fiber
‣ Drink plenty of water to avoid obstructions
‣ Physical activity
‣ Avoid laxatives: they reduce vitamin D
absorption and cause dependence
‣ Love that Miralax (Polyethylene Glycol): start the
same day you start pain meds
‣ Colace (stool softener)
‣ Initiate bowel retraining program

Fiber Sources
‣ Start slooowly (too much = > constipation and <
calories)
‣ Fruits and vegetables = best choices
‣ Beans, peas and lentils
‣ Nuts and Seeds (choking hazard < 3 years /
lying down)
‣ Whole Grains and Oatmeal
‣ Strive for Five (5 g fiber per serving)
‣ Supplements and mineral oil (last resort – can
cause nutrient deficiencies)

Swallowing Difficulties
‣ Aspiration
‣ Gastroesophageal reflux (GER)
‣ Frequent pneumonia may result from
silent aspirations (no cough)
‣ Needs to be assessed by a Speech
Therapist
‣ May need a barium swallow test

Signs of swallowing difficulties
‣ Facial weakness, decreased sensation
‣ Congestion, noisy “wet” sounds
‣ Coughing/choking/gagging before, during
or after a swallow
‣ Food refusal
‣ History of upper respiratory infections
‣ Poor intake
‣ Inefficient and lengthy mealtimes
‣ Inappropriate progression of feeding skills

Modified Consistency Meals
‣ Thickened liquids
• rice cereal or commercial thickeners
‣ Liquid
‣ Blenderized (broken jaw)
‣ Pureed (developmental disorders)
‣ Mechanical soft (dental surgery /
transition)
• Chopped, ground or mashed

Failure to Thrive (FTT)
‣ Growth failure under 3 years old
• Altered infant-caregiver interaction
• Delayed development
• Abnormal behavior
• Oromotor or sensory disorders
• Multifactorial
• Secondary due to chronic disease
• inadequate energy intake, inadequate absorption,
excess metabolic demand, or defective nutrient
utilization

FTT Contributors
‣ Too many simple carbs
‣ Over-restricting fat
‣ Excess fluids
• Limit milk to 24 oz per day for 1 and 5 years to promote
adequate intake of other nutrient-dense foods and to prevent
iron-deficiency anemia
• apple juice may induce fructose and sorbitol malabsorption
‣ Iron deficiency
• suboptimal intake or inadequate nutrient absorption, leads to
poor appetite
‣ Vitamin D deficiency: supplement when breast feeding
‣ Vitamin B12 deficiency: Strict vegetarians and Vegans are at risk
‣ Zinc deficiency
• Growth failure, skin lesions, alopecia, irritability, poor appetite

Small appetite – big energy
needs
‣ Children with OI may have a higher
metabolic rate
‣ Scoliosis may reduce stomach volume
‣ Pain reduces appetite
‣ Trauma increases energy needs
‣ Control issues
‣ Bathroom issues

Energy dense foods
‣ Heathly fats
• Olive oil, Canola oil
• Nut butters (over 2 years old)
• Nuts (over 3 years old)
• Avocado
• Wheat germ, ground flax seed meal
‣ Saturated fats
• Butter, cream, cream cheese, cheese
‣ Others
• Dried fruits (great for constipation too)

Weight Management
• Underweight:
• Due to: poor appetite (pain), scoliosis (organ
compression), high metabolic rate
• Problems: reduced immunity, hormonal
imbalance, nutrient deficiency, growth stunting
• Overweight:
• Due to: lack of physical activity, excessive calories,
hormonal imbalance
• Problems: musculoskeletal stress, fractures,
diabetes, heart disease

Ideal Body Weight
‣ BMI: (pounds / (inches * inches) * 703
• E.g. Weight 50 lb. Height 42 inches
• BMI is 19.9
Ideal adult BMI is 19 – 25. 27 or 28 is closer to
the norm for adults with OI.
Waist circumference: not a valid measure for
people with OI
How do you feel about yourself?

Healthier Food Choices
‣ The basics:
• Eat lots of non-starchy vegetables (1/2 your plate)
• Choose whole grains
• Include dried beans and lentils
• Include fish 2-3 times per week (Omega 3s)
• Choose lean meats
• Non-fat dairy
• Don’t “drink your calories”
• Small quantities of liquid fats
• Watch out for “snack attacks”
• Beware of “portion distortion” - even with “health foods”

Wise Choices
‣ Subway vs MacDonalds
‣ Salad Bar vs Pizza
‣ Mustard or hummas vs Mayonaise
‣ Water vs Soda or Juice
‣ Grilled vs fried
‣ Lemon juice + herbs vs butter + salt
‣ Whole wheat vs refined or white
‣ Fish vs Spare Ribs or Rib-Eye
‣ Fruit vs Candy

Look familiar?

General Good Nutrition
‣ Aim for a healthy weight by choosing sensible portions
and being physically active every day
‣ Eat at least 5 servings of vegetables and fruits every day
‣ Choose a variety of grain foods, especially whole grains
‣ Choose plenty of Calcium rich foods
‣ Limit saturated and trans fat, and cholesterol and
moderate total fat
‣ Limit caloric beverages (including 100% fruit juice,
“punches”, iced teas, Gatorade/vitamin water, soda)
‣ Moderate the use of salt
‣ Avoid alcoholic beverages

Plate Method

Meal Planning
• Plate Method – good starting point for
nutritionally balanced meals
• Counting Carbs – great for weight loss AND
BG control
• Helps minimize junk food
• 1 – 3 yrs 25 to 40g per meal, less than 6g snack
• 4 – 7 yrs 35 to 50g per meal
• 8 - 12 yrs 50 – 65g per meal
• 13 – 18 yrs 65 to 85g per meal

Dairy
‣ High in protein, calcium and vitamin D
‣ Fat free or 1% milk or yogurt
‣ Avoid “fruit on the bottom”
‣ Why go Greek? – Loaded with protein
‣ Lactaid or enriched soy
‣ Rice milk = very little protein
‣ Cheese – limit to 1 oz of low fat per day

Fruit
‣ All fruit has carbs
‣ NO fruit juice unless BG is low
‣ Fresh or frozen (no added sugar)
‣ Size counts!
• 1 serving = 1 fist size (big kids get more)
• 1 banana = 2 servings
• 2 to 3 servings per day
‣ Great in salads or as a snack

Low Carb Vegetables
‣ Fresh or frozen (no sauces)
‣ The more the merrier
‣ Dipping raw veggies
• Hummus, salsa, fat free cottage cheese
‣ Let the kids grow them
‣ Sneak them on sandwiches
‣ Try new recipes www.allrecipes.com

Grains / High Carb Veg
‣ Size counts! ½ cup – 1 cup total
‣ Grains:
• Rice, pasta, couscous, barley, quinoa
‣ High Carb Vegetables:
• Potatoes, sweet potatoes, yams, peas, corn,
lima beans, winter squash, plantains

Protein
‣ Keep it Lean!
‣ Eggs, fish, chicken, turkey
‣ Meatless Mondays (great for the budget)
• Beans, lentils, tofu, tempeh
‣ Avoid: sausages, hotdogs, ribs, bacon
‣ Grill or bake – Limit fried food
‣ Avoid the breading

Also important…….
• High fructose corn syrup Fructose and
NAFLD
• Good reason to eliminate juice and soda!
• Check labels for high fructose corn syrup
• Vitamin D: RDA for teens is 600 IU per day
• Probably not enough, especially for obese teens
and teens with poor diets
• Up to 80% are deficient / insufficient
• Usually on 1,000 IU daily or Replesta 50,000 IU
weekly for 8 to 12 weeks, then maintenance.

Vitamin D and Calcium
‣ Like PB and J, they go together
‣ Calcium:
• 0-6 months 200 mg/day
• 7-12 months 260 mg/day
• 1-3 yrs 700 mg/day
• 4-8 yrs 1000 mg/day
• 9-18 yrs 1300 mg/day
• > 18 years 1000 mg/day
• Women > 51 1200 mg/day
• Men > 71 1200 mg/day
• No weight related guidelines available

Calcium
• Influenced by:
• Protein, caffeine, soda, fiber, bone turnover (urine
loss), age, obesity, medications, and fat
malabsorption
• Min. 700 mg per day Max 4000 mg (UL)
• Aim for 1000 to 1300 mg, ideally from food
• Supplements: Calcium Citrate or Calcium
Carbonate (with food)
• Small doses, twice a day (cut tablet in half)

Calcium Sources (mg)
‣ Fortified oatmeal, 1 packet 350
‣ Cheddar cheese, 1½ oz. shredded 306
‣ Milk, nonfat, 1 cup 302
‣ Yogurt, plain, low-fat, 1 cup 300
‣ Tofu, firm, with calcium, ½ cup 204
‣ Orange juice, fortified with calcium, 4 oz. 150
‣ Salmon, canned, with edible bones, 3 oz. 181
‣ Baked beans, 1 cup 142
‣ Cottage cheese, 1% milk fat, 1 cup 138
‣ Frozen yogurt, vanilla, soft-serve, ½ cup 103
‣ Cheese pizza, 1 slice 100
‣ Turnip greens, boiled, ½ cup 99
‣ Broccoli, raw, 1 cup 90

Vitamin D – A Powerful Hormone
‣ Needed for:
• Calcium absorption
• Calcium / Phosphate balance: N.B. ESRD
• Bone remodeling
• Immune function
• Control of inflammation
• Modulates many genes encoding proteins that
regulate cell proliferation, differentiation, and
apoptosis (cancer promotion or prevention?)
• Pain Management? (Shriner’s research)
• Prevention of DM, HTN, IGT, MS ?

Vitamin D Sources
‣ Produced endogenously (by our bodies)
when ultraviolet rays on the skin trigger
Vitamin D synthesis
‣ Food:
• Egg yolks, nuts, beans, salmon, tuna,
mackerel, poultry, lean meats, fortified foods
‣ Supplements
• D2 (ergocalciferol)
• D3 (cholecalciferol)
• D3 is up to 3 times more effective at raising
serum calcidiol levels (contraversial).

Vit D: Why so many names?
‣ Vitamin D must go through 2 processes to
become active:
• The liver converts vitamin D to calcidiol, or
25 hydroxyvitamin D, written as 25 (OH)D.
This is what the blood tests measure.
• Then the kidney converts calidiol to the active
form: a hormone called calcitriol, or
1,25 – dihydroxyvitamin D,
written as 1,25 (OH) 2 D

Testing Vitamin D levels
‣ Serum concentration of 25(OH)D (calcidiol) is
the best indicator of vitamin D status due to its
long half-life of 15 days
‣ Does not reflect body stores (fat soluble)
‣ The active form, 1,25 (OH) 2 D (calcitriol) is NOT
a good indicator of vitamin D status as it has a
very short half-life of 15 hours, and is closely
regulated by parathyroid hormone, calcium and
phosphate.
‣ Calitriol levels only drop when deficiency is very
severe

Vitamin D
IOM Report 2011
Age Calcium RDA UL Vitamin D RDA UL
mg mg IU
0 to 6 mths 200 1000 400 1000
6 to 12 mths 260 1500 400 1500
1 to 3 years 700 2000 600 2500
4 to 8 years 1000 2500 600 3000
9 to 13 years 1300 3000 600 4000
14 to 18 years 1300 3000 600 4000
19 to 30 years 1000 2500 600 4000
RDA for Calcium: Meets needs of > = 97.5% of population
RDA for vitamin D: supports serum 25OHD level of 20 ng/ml

How much is too much?
‣ UL, per NIH, is 4000 IU: some prescribe more
‣ Intake level at which Vitamin D is toxic is unknown
‣ Sun exposure and food, other than cod liver oil, do not
cause toxicity.
‣ Toxicity more likely from long-term supplements
‣ Large doses for a short period increase stores, not
toxicity. E.g. 50,000 IU /week for 8 weeks
‣ Serum calcidiol:
• < 20 ng/ml = deficient
• 20 – 29 ng/ml = insufficient
• 30 ng/ml or more = adequate
• >200 ng/ml (>500 nmol/L) = potentially toxic

Risks of Overdosing Vit D
• Kidney stones (17 to 20% increase)
• Pancreatic Cancer (Finnish study)
• Birth defects
• Excessive Calcium blood levels, altered
mental status, arythmia
• Delayed sexual maturity
• Side effects: nausea, vomiting, poor appetite,
constipation, weakness, and weight loss.

Getting Active
‣ Benefits of increased physical activity
• Improved functioning of cardiovascular system
• Improved strength and physical work capacity (N.B. lungs)
• Enhanced mobility and balance (less falls - less fractures)
• Decreased risk for coronary artery disease (CAD)
• Lower LDL and triglycerides
• Higher HDL
• Lower blood pressure
• Reduced stress / improved quality of life and self-esteem
• Reduced weight
• Reduced insulin resistance / increased insulin sensitivity
• Reduced hyperinsulinemia (proposed risk factor for
atherosclerosis)
• Enhanced fibrinolysis / less risk of clotting
• Higher lean muscle: body fat ratio (burns more calories at rest)

Getting Active
‣ Medical clearance for physical activity
‣ Customizing an exercise regimen that’s right for you
• Minimize risk of injury
• Avoid boredom: Mix it up
• Make it time effective
‣ Get professional help
• Physical Therapist
• Rehabilitation Specialist
‣ Implementing
• Schedule it!
• Make it a priority
• Buddy up
• Ideas: Wii Fit, swimming, chair exercises, deep breathing

Use your health-care team
‣ Medical Nutrition Therapy (MNT) provided
by a Registered Dietitian (R.D.)
• Part of your health-care team
• Diagnose underlying nutrition issues
• Individualize plan for lifestyle changes
• Treat to goals for weight, blood glucose,
cholesterol, blood pressure
• Translate research into useable information
• Improve health and quality of life

Conclusion
‣ Get tested today: Annual physical
‣ Expand your knowledge
‣ Set achievable goals
• Measurable
• Realistic
‣ Modify lifestyle with
• Healthier food choices
• Daily physical activity
‣ Tap into local resources
You’re not alone
References: http://www.nutritioncaremanual.org/